Image description: A notecard hanging from a string. Text reads: Do you like me?
(This is an edited and expanded version of a post that was shared with my patrons one week early. If you’d like early access to my posts, and the ability to suggest changes or make comments before they go up on my blog, consider backing my Patreon!)
On April 9, 2018, I wrote to Jonathan, who has been a patron since the beginning of the project (and a partner for 10 years!), “Your birthday is coming! What do you want me to write about this year?”
He wrote back almost immediately, “Caring what others think.”
I like decisiveness.
And I like this topic.
Just to expand on the topic…
The shame I feel over caring what other people think is difficult to navigate. When I was a kid I was told, over and over again, that I was just supposed to be myself and not care what other people think.
That sentiment really oversimplifies things. On the one hand, I get it. Caring too much about what other people think can really paralyze you. It gives other people a lot of power over you. It creates a lot of pressure, sometimes, to do things that you wouldn’t otherwise do. It stunts your ability to develop your own ideas, your own interests and your own destiny.
Caring what others think is seen as a sign of weakness. It means you don’t have your own personality; you’re two-faced; you lack principle and your own moral compass. We don’t trust people who care what other people think because we think of those people as fake. Caring what others think “too much” can be inaccurately pathologized as mental disorders such as paranoia, bi-polar and attention seeking disorders.
On the other hand, all of the non-vocal messaging you get is that it’s actually really, really important to worry about what other people think. Your social networks depend on what other people think about you. Your job depends on what other people think about you. Your ability to access resources depends on what other’s think of you.
It’s a cruel myth that only the weak care what other’s think. Corporations literally invest billions in controlling what other people think about them. Politicians direct a considerable amount of their power and capital towards carefully curating their public image. Many of our public institutions operate entirely based on people’s impression of the institution.
Clearly, it’s important to carefully balance the stock you place in what other’s think and your own self-confidence and commitment to be “true to yourself” despite social pressure. It’s complicated.
I’m out of balance over it. Caring what other’s think causes me anxiety. When I feel like someone is upset or angry with me I fixate on that. When I feel like someone thinks poorly of me or has a negative impression of my skill set it completely eats away at me. It makes conflict resolution very difficult for me to manage sometimes. It also means that I sometimes have a hard time being honest and authentic not only with the people around me but also with myself. I’m struggling to find a way to bring that into balance. I think, over the years, I’ve developed real strengths because of my obsession with what other’s think. I’m very keen to non-verbal communication and a pretty empathetic person. I’ve learned a lot about social cues and can pick out social patterns better than most. Meeting expectations is important to me and, when I have proper balance in my life, I’m pretty good at exceeding expectations because I care what other people think. I think my compassion also stems from caring and that’s not something I care to lose.
So, I think the concept of caring what others think is one that could really benefit from some exploration. It’s one of those deceptively simple ideas that actually has a lot of layers and a lot of depth to it.
After this post was suggested, this topic kept coming up. And it kept coming up in ways that really supported Jonathan’s insight into the way this idea “has a lot of layers and a lot of depth to it.”
It showed up in narrative therapy sessions, where one of my community members identified “caring what others think” as something that is both a cherished characteristic that allows them to bring empathy and compassion into their relationships, and also something that keeps them from acting on their own desires and needs.
Then it showed up in that same way for another community member. They care a lot about what other people think of them, and it’s both something they value in themselves and also something that they experience as a block or obstacle when trying to care for their own needs.
Then it showed up in a similar was for a third community member, who also talked about this particular experience in work contexts, where caring about what coworkers think is a skill that keeps them from oversharing and allows them to maintain boundaries, but also has them feeling isolated sometimes.
This idea of “caring what others think” became the basis of the “too much of a good thing” project that I’m undertaking as part of my master of narrative therapy and community work program (Note: I am still looking for participants for the project, so if it sounds interesting to you, get in touch!) Because the idea was growing so much, it seemed impossible to come back to this original writing prompt. I felt that I needed to get the whole project done in order to present something worthwhile.
(Sounds a bit like I’m caring about what others think of my writing, right? This shows up frequently for me, and it means I generally publish work that I’m proud of, and I don’t share nearly as much as I would like to. For the next while, I’m working on challenging this urge towards perfection and I’ll be sharing things that are a little less intensely edited. We’ll see how it goes!)
In May, this idea of “caring what others think” showed up in my own life in a big way when I was suddenly thrown headfirst into a situation where “what people think about me” became something I had to care about intensely. I was feeling (and being) observed and critiqued in personal and impactful ways. Writing about this topic felt more and more impossible.
It was everywhere! Overwhelming!
I decided to come back to this post, even though the “too much of a good thing” project is still underway, because “caring what others think” seems critical on its own. Although this topic fits within a larger framework, it deserves its own examination and exploration. As Jonathan pointed out, “it’s a cruel myth that only the weak care what other people think.” But that myth is everywhere. It’s one that impacts most of us in one way or another.
Ask the Internet
If you google “caring what other people think,” you’re likely to get a whole bunch of results with instructions for how to stop, and often with language that pathologizes or shames people who do care what other people think.
In one post on Psychology Today, the author writes, “One of our more enduring social fallacies is the idea that what others think of us actually matters. While this notion clearly has primal evolutionary roots, its shift from survival instinct to social imperative has become one of our greatest obstacles to self-acceptance.”
I have questions about this.
Is it a fallacy that what others think of us actually matters?
What my boss thinks of me matters to my employment.
It matters what the community members who consult with me think of me. It impacts my efficacy as a narrative therapist. Some research suggests that the best indicator of success in the therapeutic relationship is the “therapeutic alliance” (meaning the positive relationship between the therapist and the person consulting them). One review of the literature found that multiple studies “indicated that the quality of the alliance was more predictive of positive outcome than the type of intervention.” If that’s the case, it matters a whole lot to my work as a narrative therapist what people think!
I also wonder about the “primal evolutionary roots” of caring what people think. I am skeptical of most evolutionary psychology, given its many problems. (For one view on these problems, this problematically hetero- and cisnormative Scientific American article is a good place to start.) I particularly question this “primal” nature of the issue given the very contemporary context within which so many of us do care what others think.
For marginalized individuals especially, caring what people think can keep us alive. Caring what others think means knowing, deeply and intimately, what the dominant expectations are so that we can do our best to adapt to them.
For neurodivergent folks on the autism spectrum, caring what others think is part of the training – look at the language used in the popular Social Thinking program. (Content note on this link at the Social Thinking site for unsettling language about autistic kids. If you just want to read critiques, many of them by autistic writers, this facebook thread is full of information, but also upsetting to read.) “Expected” and “unexpected” behaviours, where “unexpected” means that the child hasn’t responded to the “hidden rule” and could be making people “uncomfortable.” Talk about teaching kids to care what others think!
On a more positive note, caring what other people thinks can foster a sense of being “accountable to the whole,” to quote my friend and mentor Stasha. This accountability to the whole means that we maintain an awareness of how our actions impact each other, and when Stasha made this comment I wondered whether a more intentional and compassionate relationship with the idea of caring what people think might be one way to challenge the individualism and isolation that our current capitalist context enforces.
Another article, this time from Lifehack, quotes Lao Tzu, “Care about what other people think and you will always be their prisoner” and concludes, “Once you give up catering to other people’s opinion and thoughts, you will find out who you truly are, and that freedom will be like taking a breath for the first time.”
Again, I have questions.
The Socially Constructed Self
Is “who I truly am” really something that happens entirely in isolation, entirely internal and apart from other people and what they think? I don’t think that it is.
I brought this question to one of the narrative therapy groups I’m part of, and I was very worried about what the group would think of me. I wrote, “This is an absolutely ridiculous question because I feel like I have read *at least* seven different version of this idea, but I’ve been searching and failing, so, halp?! I am looking for a good, comprehensive-ish, ideally readable-by-non-academic-audiences (but I’ll take an academic article also) resource on the idea of the self being shaped by context and relationships.”
I felt ashamed of the fact that I needed help, but the responses that I got were incredibly validating!
One person commented to say they were following, and I said, “You have no idea how relieving it is to realize I’m not alone in this.” They replied, “I think one of the most dangerous things a therapist can do is let their ego in the way of asking questions – well, that’s what I tell myself as I manage my “imposter syndrome” 😉”
Someone else said, “So glad you asked!! I need just the thing and didn’t think of asking here!”
So many of us caring so much what each other would think, and finding solidarity and companionship in realizing that we’re not alone in it. Although the way that anticipatory shame keeps us silent is a problem, I think that the shared experience is valuable. And normal. In that group, we are all either practicing therapists or students of narrative therapy or both, and we still care deeply about what other people will think of us. We can respond to the ways in which this caring becomes a problem without demanding that we suddenly cease caring entirely. And without accepting that we are somehow incomplete because of it!
One of the responses was from someone linking me to this resource by Ken Gergen.
Gergen’s “Orienting Principles” are here (from the link – I highly recommend following the link and listening to his talk!):
We live in world of meaning. We understand and value the world and ourselves in ways that emerge from our personal history and shared culture.
Worlds of meaning are intimately related to action. We act largely in terms of what we interpret to be real, rational, satisfying, and good. Without meaning there would be little worth doing.
Worlds of meaning are constructed within relationships. What we take to be real and rational is given birth in relationships. Without relationship there would be little of meaning.
New worlds of meaning are possible. We are not possessed or determined by the past. We may abandon or dissolve dysfunctional ways of life, and together create alternatives.
To sustain what is valuable, or to create new futures, requires participation in relationships. If we damage or destroy relations, we lose the capacity to sustain a way of life, and to create new futures.
When worlds of meaning intersect, creative outcomes may occur. New forms of relating, new realities, and new possibilities may all emerge.
When worlds of meaning conflict, they may lead to alienation and aggression, thus undermining relations and their creative potential.
Through creative care for relationships, the destructive potentials of conflict ma be reduced, or transformed.
Two things jump out at me particularly: that worlds of meaning are created within relationships (which I take as a direct contradiction of the idea that we “find out who we truly are” only outside of relationship and others influence), and that together we can create alternatives.
On a similar note, I also have questions about why freedom is so individualized, if there is so much creative potential in relationships.
Of course, these articles that advise us on how to stop caring what others think of us aren’t suggesting that people shouldn’t have relationships, and treating them as if they are would be setting up a straw man that isn’t there. However, I think that there is an individualist discourse present in these articles that suggests that we can have relationships without caring what the people in our relationships think of us, and I think that discourse invites a lack of accountability and collaboration, and suggests that there is a core self that exists apart from the self within relationships. I disagree with this idea.
Melanie Grier, another wise friend, said:
I think a good question to always ask yourself is *whose* approval you are seeking and how it serves you. I’ve been thinking about this as I’ve returned to school and have been working to let go of the desire for approval from my parents, understanding that as a practically impossible pursuit.
It feels good to be liked… and I think if that is your motive, just to be liked for the dopamine rush it provides, it can cause an issues once your self-worth can easily become interconnected with the external experience completely independent of you.
But the desire for approval from valued mentors, friends, partners, peers can serve us differently – it can help us build functional, healthy relationships where both parties are mutually invested in behaving in a way that results in approval or liking. It holds us accountable in a way, wanting to do right by a person. And I think we often grow by keeping expectations of each other reasonable. Working to feel validated, if consciously motivated, can help us do awesome things, I believe…
I find even knowing that people dislike me helps me self-reflect. It can again clarify values, sometimes discovering where you’re not willing to budge.
A lot of this resonates for me, because there are many elements of society that will never like or approve of me, because I am non-binary, I am bisexual, I am polyamorous, I am AFAB and often am read as femme. When I care what these people think of me (in the sense of wanting them to like or approve of me), I am caught in an impossible trap because the only way to gain that approval is to change who I am. However, even there I do care what they think because what they think points to systemic and structural injustices. I care what they think because I want to change the social context within which those thoughts of transantagonism, heterosexism, femmephobia, and all the rest (as well as all the injustices that I don’t face as a white settler with thin privilege, English language privilege, educational privilege, etc.)
Melanie also said, “I think we are too interconnected as a species and biosphere to be an island. We impact each other too much.”
In yet another article, Tinybuddha suggests that, “Worrying about what other people think about you is a key indicator that you do not feel whole without the approval of others,” and, “When you are truly content with who you are, you stop being concerned with whether or not other people like you.”
The same types of questions come up.
Why does caring about the approval of others mean I don’t “feel whole”? Why can’t I “feel whole” while also caring about approval? Why is the approval of others automatically dismissed, when it is critical to having consensual and mutual relationships? What is active consent, other than enthusiastically and intentionally caring about getting the approval of the person you’re interacting with before taking an action?
This connects to Melanie’s points about whose approval we’re seeking, and to the idea of certain types of approval being entirely unavailable. Social isolation is recognized as a source of pain and distress, and social isolation is tied directly to what people think of us (whether we are likeable, friendable, loveable). And yet, the idea that we shouldn’t care what people think seems to greatly privilege individualism – being ourselves, being okay with being ourselves, even if that means being by ourselves.
My questions in writing this post kept coming back to why we valorize individualization. Why is it better to be an island? Why do we even believe we can be islands?! Isn’t there a whole song about how that doesn’t really work out? Sure, it may be true that the rock feels no pain, and the island never cries, and maybe that’s what we are hoping for when we distance ourselves from caring what others think. But that’s not the life that I want for myself.
Melissa Day points out that this valuing of individualization only happens within certain contexts. She writes:
[W]e fetishise individualism only within certain prescribed boundaries. Think of the hipster – I was into that before it was cool. Okay, great, you’re an individual. But someone who’s into completely different music/food/subjects and isn’t doing it to be “cool” or doesn’t have those become popular isn’t looked on as a heroic individual, but rather a weirdo or a freak (and yes, those words hurt and were chosen specifically). The sense I get is that there are two types of “don’t care what others think.” 1. They feel secure enough that who they are or what they like falls in society’s norms that they can be individual but still part of the whole 2. They like what they like and it falls so far outside society’s norms that caring about what others think really isn’t an option. This is written from the perspective of someone who had two choices growing up – change who you are and conform or stop caring about other people, be yourself, and take the lumps that followed.
I think… that it ties into this idea of everyone is special and unique. I would think the end goal of being different comes from a place of “If I am the same as everyone else, I will not be Special and Special is good.”
We are, collectively, put into a complex conundrum – we must care what other people think, and we must fit in, but we must do it in exactly the right way or we risk deviating too far from the norm and being punished for it.
As NoirLuna points out, “I feel like life would be way easier if blending in had been one of my options, but I figured out young it wasn’t, and managed to stop trying. (Which was for the good.)”
Wanting to Be Liked
Why is it a problem to care whether or not people like me?
I want my friends, my family, my lovers, my companions on this journey- I want them to like me!
I want them to like me because I know that I tend to spend time with people that I like. I am invested in relationships with people that I like. And I assume that other people are, if not exactly like me, then at least a little bit like me. So if my friends like me, they’ll want to spend time with me. They’ll want to be close to me. And I am invested in that outcome.
I have found that people are more likely to spend time with me when they like me.
And the reverse is also true. I have found that I don’t enjoy spending time with people that I don’t like, and I don’t enjoy spending time with people who don’t like me!
But then again…
There is a way of caring about what others think that can invite trouble. As Jonathan writes, “I’m out of balance over it. Caring what other’s think causes me anxiety. When I feel like someone is upset or angry with me I fixate on that. When I feel like someone thinks poorly of me or has a negative impression of my skill set it completely eats away at me. It makes conflict resolution very difficult for me to manage sometimes. It also means that I sometimes have a hard time being honest and authentic not only with the people around me but also with myself.”
Many folks can relate to that.
This topic has been challenging to write about because I, too, care “too much” about what other people think. I want people to like me. I want people to think that I am a good and worthy person. I want people to think that I am competent and capable.
The problem, as I have come to understand it in the process of sitting with this prompt, is not necessarily in caring what others think (I think I’ve been clear that I don’t consider that a problem!) but rather, when I create a totalizing narrative of myself based on what other people think. What I mean by that is, if I can only be “a good person” when everyone else agrees that I am so, that’s a problem. It’s a problem because no person is good all the time, no person can be.
Similarly, if I want to be a “worthy person” and I can only perceive myself to be that when everyone thinks I am, that’s a problem!
The problem, in my mind, is when there is only room for a single story of the self. When that story is the one told by someone else’s opinion of us (including their opinion that we can only be “whole”, or “free”, or “authentic” when we don’t care what others think), it invites so much shame to the table. It invites us into so many feelings of personal failure. We need many stories of ourselves – stories of being good and stories of being less good, stories of being liked and stories of being less liked, stories of success and stories of growth. It is okay to care what other people think. It is okay to be conflicted about caring what other people think. It is okay to actively reject what other people think. There’s space. We need that space.
I struggled with this topic because, as much as I reject the idea that caring what other people think means I am somehow “not authentic” or “not whole” or “not free”, I have internalized the idea that I shouldn’t care what other people think. That it “isn’t any of my business” and that “the only thing I can control is myself.”
But this framing grates.
It feels wrong.
It feels far too individualizing.
Of course I care what people think of me! And so do the community members who consult me, and so does the patron who requested this topic, and so might you.
The idea that we should be fully autonomous, insulated individuals, small islands of personhood operating on our own, without caring or being moved by other people’s opinions… I think that’s a really harmful and hurtful idea.
That doesn’t mean that I am governed by other people’s thoughts, or that I am responsible for their thoughts, or that I am incomplete because I care about their thoughts. It means that, as Ken Gergen outlines, my reality (my worlds of meaning) is created through collaboration and context. When I engage meaningfully and intentionally with the people around me, including what they think of me and my actions, a lot of good in my life is made possible by this caring.
Image description: Kate’s incredibly stylish orange cane, leaning against white drawers with silver handles, on a wooden floor.
This is a Patreon reward post for Kate, and was available to patrons last week. Patreon supporters at the $10/month level get a self-care post on the topic of their choice during their birthday month. These supporters make my work possible! Especially as I head into my Master of Narrative Therapy and Community Work program, my patrons ensure that I can keep producing resources and self-care content. (And wow, there are some really great resources in production! Check back tomorrow for a post about that!)
Kate and I have known each other for a few years, and got to know each other while we were both going through some challenging times (though we didn’t actually meet in person until quite a bit later, and still aren’t able to spend as much time together as either of us might like!)
Kate has been one of my most outspoken supporters, and I appreciate how she is always willing to leap in with an offer of help or a suggested solution.
Her birthday is in January, and her topic is, “maintaining intimate relationships and partnerships with a chronic illness or chronic pain.”
I struggled with writing this post because I am experiencing my own spoon shortage. I’m in the middle of a depressive episode, have been sick for the last two months, and my fibromyalgia pain has been spiking. All of these spoon-hoarding gremlins are impacting my own relationships, challenging my sense of who I am and how I navigate the world, and putting gloom-coloured glasses on my view of the future. When I write about self-care for folks who are struggling, it’s easier when I can write about a struggle I am not currently experiencing. It’s easier if I can yell back into the labyrinth from the safety of the outside. Easier, but not always better. It is a myth that the best insights come from people who have “figured it all out” – I believe the opposite is often true. When we are in the thick of it is when we have the most relevant and meaningful insider information. Our struggle is not a barrier to our ability to help each other – it is the fuel that allows us to help each other. This is one of the key principles of narrative therapy, and as much as it challenges me, I am trying to bring it into my own life. Can I write something worthwhile from the heart of the struggle? Yes. Well, I think so. Let’s find out.
What Kate asked about was maintaining intimate relationships while navigating chronic illness or pain. In relationships where one person experiences chronic issues and another doesn’t, those issues can create a significant disparity in ability and access to internal resources. (And in relationships where multiple people are experiencing chronic issues, the pressure resulting from reduced access to resources can grow exponentially.)
Being in the position of having (or perceiving that we have) less to offer often triggers shame, fear, and stress. In my own relationships, I worry that I’m not worth it, that my partners will grow tired of me. I worry that I’m “too much.” I have heard the same worry from my clients.
This anxiety is so natural, and so understandable. Our society does not have readily accessible narratives that include robust “economies of care.” Our most common narrative has to do with “pulling our own weight” in a relationship, and our definitions of balanced relationships rely so heavily on ideas of equality rather than justice. Split the bills 50/50. Take turns washing the dishes. You cook, I’ll clean. My turn/your turn for the laundry, the diapers, the groceries.
And it becomes more complicated when we consider the intangible labour of emotional support and caregiving, which is disproportionately assumed to be the role of women in relationships with men, and, since women are also often the ones experiencing chronic pain or illness, this can compound into a messy and unjust situation pretty quickly. (To back up these claims, check out the links at the end of this post.)
Thankfully, both of these problems – the tit-for-tat approach, and the unjust division of emotional labour – are being challenged by writers, activists, and communities on the margins.
In Three Thoughts on Emotional Labour, Clementine Morrigan writes, “We can name, acknowledge, honour, perform, and yes, accept emotional labour, instead of simply backing away from it because we don’t want to be exploitative.”
This is so challenging for so many of us, because we do not want to exploit our friends, our partners, our communities. When we experience chronic illness or pain, the fear that we might slide into exploitation and “being a burden” becomes amplified. Morrigan suggests that we can ask three guiding questions about the emotional labour we are offering or accepting – Is it consensual? Is it valued? Is it reciprocated?
If we can answer yes to each – if we are discussing what we need and what we can offer, if we are valuing what we are offered and if our own offerings are valued, and if there is reciprocity – fantastic!
But what does reciprocity look like in situations where there is a disparity in access to resources?
Morrigan suggests that:
“It is important to acknowledge that some of us need more care than others. Some of us, due to trauma, disability, mental health stuff, poverty, or other reasons, may not be in a position to provide as much emotional labour as we need to receive. We may go through periods where are able to provide more emotional labour or we may always need more care than we are able to give. We may be able to reciprocate care in some ways and not others. This is totally okay. We need rich networks of emotional care, so that all of us can get the care we need without being depleted. We need communities that value and perform emotional labour—communities that come through for each other. Reciprocity is a commitment to building communities where all of us are cared for and no one is left behind; it is not a one for one exchange.”
It is not a one for one exchange.
This is so critical.
And it’s so hard to make space for this. It’s hard to see our worthiness and the value we bring to a relationship when what we offer has shifted from what we were able to offer before the chronic issue grew up within us and between us.
Not only that, but it’s often hard for our partners to recognize what we’re bringing to the relationship. Not because they don’t love and appreciate and support us, but because they are also caught within the web of accessible narratives and ableist norms.
In order to answer “yes” to Morrigan’s “is it valued?” question, we need to be able to look clearly at the work our partners, friends, and families are doing for us and acknowledge that work. And we need to be able to look clearly at our own work and speak openly about it, so that it can be valued. Neither side of this is easy.
Becoming aware of the skills and insider knowledges that we develop as we live our new pain-, disability-, or illness-enhanced lives can help with recognizing, articulating, and allowing people to value our new contributions.
In A Modest Proposal For A Fair Trade Emotional Labor Economy (Centered By Disabled, Femme of Color, Working Class/Poor Genius), Leah Lakshmi Piepzna-Samarasinha writes:
“Sick and disabled folks have many superpowers: one of them is that we often have highly developed skills around care. Many of us have received shitty, condescending, charity-based care or abusive or coercive care—whether it’s from medical staff or our friends and families. We’re also offered unsolicited medical advice every day of our lives, mostly coming from a place of discomfort with disability and wanting to “fix” us.
All of this has made us very sophisticated at negotiating care, including our understanding that both offering and receiving it is a choice. The idea of consent in care is a radical notion stemming from disabled community wisdom. Ableism mandates that disabled people are supposed to gratefully accept any care offered to “fix” us. It’s mind blowing for many people to run into the common concept in many sick and disabled communities, that disabled people get to decide for ourselves the kind of care we want and need, and say no to the rest. This choicefulness has juicy implications for everyone, including the abled.”
I love her wording here. The juicy implications of choicefulness! Imagine the possibilities of this.
And yet, even as I revel in this juicy and nourishing framework, I remember my own deep and ongoing struggle with the concept of pain, illness, and disability as invitation, as superpower, as self. This radical reorganization of labour within relationships does not come easily, and one of the reasons it’s so challenging is because our concepts of fairness are so influenced by one to one exchanges.
Piepzna-Samarasinha addresses this fear later in the essay, reminding us that, “Disabled people often run into the idea that we can never offer care, just receive it. However, we often talk about the idea that we can still offer care from what our bodies can do. If my disabled body can’t lift yours onto the toilet, it doesn’t mean I can’t care for you—it means I contribute from what my particular body can do. Maybe instead of doing physical care, I can research a medical provider, buy groceries for you, or listen to you vent when one of your dates was ableist.”
We forget that there is still care, still reciprocity available within our relationships even when our ability to perform the tasks we used to, or the tasks we wish we could, has shifted.
Learning how to navigate this shift is challenging.
Searching for resources to share in this post, I was discouraged by the sheer volume of academic research performed by normatively abled “experts” on the outcomes for relationships that include a disabled partner. Once again, the centre scrutinizing the margins. It creates such a disempowering framework.
I was also dismayed by the fact that “should I date a disabled person” was one of the suggested related searches. Gross! GROSS!!!!
These are the narratives, and the social framework, within which we try to navigate our relationships as pain/illness/disability-enhanced individuals.
We need more robust, inclusive, intersectional, and hopeful resources. Not hopeful in the “look on the bright side” gaslighting-via-silver-lining sense. Hopeful in the sense of possibility-generating, hope that, in Sara Ahmed’s words, “animates a struggle.” Hope that reminds us that there are narratives possible outside of the ableist norm, and that we can write those love stories within our own lives.
The parts of ourselves that do not fit tidily into the ableist ideal show up in our relationships in many ways. In order to write those inclusive love stories of any kind – platonic, romantic, familial, or parental – we need to recognize and learn to navigate all of it. Financial, social, emotional, physical, mental – very aspect of ourselves that requires tending and care.
Chronic illness/pain/disability impacts our financial lives – we are often less able to work within normative capitalist models. The 8-5 grind doesn’t work if you can’t manage a desk job for 9 hours a day, and many other jobs are also out of reach. This adds pressure to our partners and social supports. Money is a huge source of shame and fear for many of us, so learning how to talk about requiring financial support, how to shift the balance of contribution in a household – overwhelming! Be gentle with yourselves in these conversations.
I find this particularly challenging. More than almost any other way in which my chronic issues impact my relationships, the financial instability that has been introduced as a result of my no longer being able to work a full-time job feels humiliating and shameful. I am working hard to carve out a living for myself, to build my business in sustainable and anti-ableist ways, to do what has to be done to pay my share of the bills. But my partners still take up more than what feels “fair” in the financial realm, and it’s hard. For me, engaging with writers, activists, and advocates who are challenging capitalism and neoliberalism has been helpful. Recognizing that there are other economic models available has opened up some space for me to still see myself as a contributing member of my partnerships and society.
Chronic illness/pain/disability also impacts our social lives – getting out to see friends can become more challenging. Our partners can end up taking on more social caring work for us, being the ones we talk to when we aren’t getting out (or when we don’t feel safe to talk about our struggle with others).
The aggressive individualism of our current anglo-european culture means that we are often isolated, and this can be so discouraging. Again, I struggle with this personally and I don’t have easy answers.
And searching for resources on parenting with chronic pain, illness, or disability is similarly challenging and disheartening. Parenting with any kind of divergence from the ideal is difficult. The weight of judgement, assumption, erasure, hostility, and isolation is so real. Although more supportive and inclusive blog posts, research papers, and articles are being written, the perception of a weirdly-abled parent is still one of lack, inability, and pity.
We often want to provide everything our children needs, without outside help. That’s the expected ideal. The nuclear family is still the celebrated norm, and the ideal of a normatively abled, neurotypical, stay-at-home, biological parent is still the target to meet. We may recognize that “it takes a village” but we resist the idea that part of what that village offers may be physically chasing after the toddler, lifting the baby, doing homework with the teen, helping with the rent. Just like we need to expand our conception of emotional labour and economies of care within relationships, we need that same expansiveness and redefinition within our parenting relationships and roles.
Which is easy to say, and incredibly hard to do.
At Disability and Representation, Rachel Cohen-Rottenberg writes, “What so many able-bodied feminists don’t get is how profound an experience disability is. I’m not just talking about a profound physical experience. I’m talking about a profound social and political experience. I venture out and I feel like I’m in a separate world, divided from “normal” people by a thin but unmistakeable membrane. In my very friendly and diverse city, I look out and see people of different races and ethnicities walking together on the sidewalk, or shopping, or having lunch. But when I see disabled people, they are usually walking or rolling alone. And if they’re not alone, they’re with a support person or a family member. I rarely see wheelchair users chatting it up with people who walk on two legs. I rarely see cognitively or intellectually disabled people integrated into social settings with nondisabled people. I’m painfully aware of how many people are fine with me as long as I can keep up with their able-bodied standards, and much less fine with me when I actually need something.
So many of you really have no idea of how rampant the discrimination is. You have no idea that disabled women are routinely denied fertility treatments and can besterilized without their consent. You have no idea that disabled people are at very high risk of losing custody of their children. You have no idea that women with disabilities experience a much higher rate of domestic violence than nondisabled women or that the assault rate for adults with developmental disabilities is 4 to 10 times higher than for people without developmental disabilities. You have no idea that over 25% of people with disabilities live in poverty.”
So that fear of embracing a new normal, subverting the neoliberal individualist norm, creating new economies of care and radically altering our relationships to be just rather than equal… this doesn’t happen in a vacuum. We aren’t just subverting norms and creating new relationship methods – we are doing so, as parents, under the scrutiny of an ableist and highly punitive culture. We are conscious of the fact that our subversion of norms, which may be possible within adult relationships, may make our parenting relationships more precarious, more tenuous.
Access to external help is readily available to the professional upper class – nannies are a completely acceptable form of external help, and parents are not judged for needing a nanny when that need is created by long working hours. Needing help in order to be more productive? Sure thing. (You’ll still face judgement, of course. Can any parent do it “right,” really? Nope.)
But needing help because of pain, illness, or disability?
That is much less socially sanctioned, and there are far fewer narratives available that leave space for that choice to be aligned with a “good parent” identity.
And yet, many of us do parent while in pain, while ill, while disabled. And we are good parents. Just like we have valuable superpowers of caring that can be brought into our adult relationships, we have the same superpowers of caring to bring into our parenting roles. What we do may look different than the pop culture ideal. How we do it, when we do it, who helps us with it – that might all look different. And that’s scary. But the value it brings to our kids is immeasurable.
One of the invitations that chronic illness, pain, and disability extends is that it pulls the curtain back on how harmful the neoliberal ideology of rugged individualism really is, and asks, “is there another way?”
I’m not great at saying “yes” to that invitation, but I’m getting better at recognizing it when it shows up. I don’t need to have all the answers, because I have a community around me that is brilliant and incredibly generous.
So, when I was struggling with this post, I asked my best friend and one of my partners to help me.
H.P. Longstocking has been dealing with the long-term effects of two significant concussions, and in a moment of discouragement at my own inability to write this post, I asked if she could help me get started. What she sent touched on so much of what I wanted to write about, so eloquently, and I’m ending this post with her incredibly valuable contribution. She is a parent, a scholar, and an integral part of the social net that keeps me going. I think there’s hope in how she has responded to this.
While I am no stranger to depression or anxiety, I had never experienced a chronic debilitating illness and I found that my self-care habits and techniques were no longer usually helpful or even always possible. Last summer I had several concussions. Because I had sustained so many as a child, these two accidents completely changed my life. Most of the summer I was not safe to drive or even walk as my second concussion happened when I tried to walk out of my bedroom and due to the concussion symptoms, I cracked my head into a wall. I could not look at screens, read, handle light or loud noises, and was told to stop having sex. All of my self-care habits were taken away.
I have always been an active person. Running and cycling have been my times of meditation and recalibration. Dancing brings me joy. Physical activity has been an integral part of my self-care since I was a small child. To have days, weeks, and months where walking short distances is the most physical activity I can safely manage, and some days not even that, has had a detrimental impact on my body and my emotional well-being.
I used to love to read. I devoured books and articles. I had just started my Masters and was supposed to be immersing myself in the scientific literature. I could not do any of that. I still struggle. Reading was my escape, my lifeline, my lifeblood, and I hoped, my livelihood. Now it causes me pain.
I was not prepared for the constant, chronic pain. Previously, I had headaches so rarely, I did not recognize them the few times a year I would experience one. Now, I have a hard time recognizing it because I am never without one. I find that I have my face screwed up in pain after someone reacts to me as if I am scowling at them. My coping mechanisms for the pain are to hyperfocus on something so I am unaware of most of the world around me. Unfortunately, this is usually my phone which in the long term makes it worse, but also as it gets worse, I have less self-control and ability to stop myself.
All of this has impacted my relationships. Without the ability to drive, I am often limited in who I can see and where I can go. Even without that, I am easily tired in social settings and my words begin to slur in mental exhaustion. I cannot handle loud spaces for very long, or if I do, I pay for it with days of recovery. I often feel isolated, alone, and incapable of taking care of myself, let alone being the partner, parent, and student I aspire to be.
But, I have adapted. Instead of reading, I listen to audiobooks. Instead of digesting dense theory or the latest studies, I listen to light narratives and fiction that has a plot so predicable that I can fall asleep and not miss much. I go for short walks instead of long bike rides.
My relationships have also changed.
It is hard to feel like you are not carrying your weight, especially in this neoliberal culture where people are valued according to how much productive and profitable output they can do. It is hard to be a partner with someone when you are more dependent and roommate than lover. It is hard not be able to see people, leave the house, focus on what someone is saying, or do what they are doing. It is so isolating and would be so much more so with poverty added as well. It hurts to see your kids do an impression of you which is just sleeping.
My friendships have changed. I am slowly learning to ask for help. To say no. To cancel plans last minute because it is not safe that day for me to go out. I cancel plans so often now that I am scared to make them. Much of my socialization now is online and sporadic. There is a price to pay for too much screen time. I am spending more time with people I do not have to hide my pain from. I do not have the resources to put up with mind games and people who suck energy. I have a few friends that make safe spaces for me to come and just nap around them so I won’t feel alone. My life is rich, even though my world and abilities have shrunk.
Self-care looks entirely different to me now. Instead of the sun on my face and the pounding of my feet on running paths, I sip tea wearing sunglasses. Instead of pushing through discomfort, I am learning to listen to it so that I do not make things worse. Instead of losing myself in the written word, I find comfort in story, sound and other sensory delights. Some of the people I spend time with have changed, and the ways I spend time with people have also. I do not know which symptoms will resolve and which I will have for the rest of my life, but while I grieve for friendships and opportunities lost, I am also grateful for the capacity to change and adapt, and trust that relationships worth holding onto can withstand the changes as well.
Further reading on emotional labour:
- Wondering about women’s differential experiences of pain? Check out the trans-inclusive Popaganda podcast on Women and Pain.
- And this Everyday Feminism article on how emotional labour defines women’s lives will give you insight into women’s experiences of differential expectations of emotional labour.
- And, if you want to challenge the gender disparity regarding emotional labour in straight relationships, check out 7 Ways Men Must Learn to Do Emotional Labour in Their Relationships.
- It’s also important to bring an intersectional lens to any discussion of emotional labour, and this article on Emotional Labor, Gender, and the Erasure of Autistic Women is both an excellent article on its own, and full of worthwhile links out.
- The Emotional Labour of the Closet: A Look at Trans Women’s Socialisation touches on the specific emotional labour that trans women are expected to offer.
- And we can’t discuss differential expectations of emotional labour without acknowledging misogynoir and the demands on Black women to be caregivers for their own communities and the white communities around them. Misogynoir and Black Women’s Unpaid Emotional Labour touches on this issue.
- And then, tie it back to chronic illness, chronic pain, disability. Disability and Emotional Labour talks about these issues, and although it’s an article related specifically to activism, it comes into our lives and relationships in many ways.
I’ve spent the last couple days mapping out my immediate upcoming projects. It’s pretty exciting, and there are many things coming up that you can be part of!
Check these projects, collaborations, and events out, and get in touch with me if there’s anything that piques your interest.
- I’m launching a book club for parents, stepparents, and caregivers of autistic kids. We’ll be reading books by autistic authors, and recentering the conversation about what autistic kids need away from neurotypical experts, to autistic experts. I feel like this is a critical counter to the standard approach, and it’s important to me because both of my stepkids are autistic. I want to do the best that I can for them, and that means listening to autistic adults. You can get involved by sending me a message and letting me know you want in. Unlike most of my work, this one will be in person. We’ll be meeting once a month-ish at my home, so space is limited. However, I’ll be writing up a detailed review of each of the books we read, and those reviews will be posted on my Patreon, and then on this blog.
- I’m collaborating on the creation of a resource for extroverts, addressing self-care and mental health, since so much of the available self-care and mental health writing assumes introversion, or assumes that being outgoing and social is incompatible with depression or suicidality. You can get involved by sending me a message. Our first in-person round table discussion is coming up on Saturday, and there will be a second in-person round table discussion later on. You can participate online (in text or skype interviews), in person (in one-on-one interviews or round table discussions), or some combination of these. I am particularly interested in talking with folks whose experience of extroversion has been impacted by cultural norms that don’t leave space for extroversion. (For example, autistic folks are assumed to be inherently introverted, and so are many Asian folks, while Black and Indigenous women are interpreted as “angry” or irrational if they’re extroverted, and women in general often find it difficult to be accepted as extroverts without being shamed for being “gossipy,” “loud,” or other unacceptable things.)
- I’m collaborating with my brilliant sibling, Domini Packer, to create a resource for survivors and supporters following sexual assault, to help build and sustain networks of support following a crisis. You can get involved by sending me a message. We’re meeting with people one on one to chat, and also talking with folks online. This is going to turn into a zine (or similar), with stories, resources, and action plans for survivors and supporters following sexual assault. We noticed a pretty big gap in the available resources, and a lot of “lean on your community” without a lot of insight into what that looks like, how to ask for what you need, how to keep boundaries between yourself and your supporters. And for supporters, a lot of “believe them, be there for them” without a lot of information about how to do self-care during the crisis so you don’t end up burning out (or worse, turning around and leaning back on the person who has just been through a trauma), how to maintain boundaries with the person you’re supporting, how to reach out for your own support in safe and respectful ways. We’re going to attempt to fill that gap a bit. I’m also interested in talking with professionals who would like to contribute. (This one is coming up quickly, so get in touch asap if you want to be involved.)
- I’m working on a resource to help folks navigate those “Bad Gender Feels” days. This project is in the germination stage, but I am starting to meet with folks to talk about what would be helpful and what they’d like to see included in a resource like this. This resource will also include information for parents and other supporters of trans and gender non-conforming kids who want to help them get through those dysphoric days.
- Possibilities Calgary events are running on the third Tuesday of each month at Loft 112 in Calgary’s East Village, and are always free to attend. Every month has a theme, and our in-person discussion becomes the framework for a shareable, downloadable, free resource booklet. You can participate at the conversations, or by sending your ideas or suggestions once the monthly topic is announced. (January is Winter Self-Care for Weary Queers.)
- The Self-Care Salons are running every month on the first or second Sunday at Loft 112 in the East Village. The cost is $50, sliding scale is available. Every month includes an in-depth conversation and a resource book. 10% of the profit from the Self-Care Salon goes to the Awo Taan Healing Lodge. (In January, Vincci Tsui, RD will be facilitating a discussion about food, health, and bodies that is size-inclusive, anti-diet, fatphobia-challenging – Self-Care Salon: Bodies, Food, and Health.)
- Bridges and Boundaries: Social Self-Care will be launching Jan 22. It’s a 6-week online course focusing on building tools for social self-care. The cost is $150, sliding scale is available, and it’s going to be awesome. You can sign up by sending me a message.
- You can also get involved by supporting my Patreon. And at the $10/month level, I’ll write you a post on the self-care topic of your choice. My Patreon supporters are the reason I’m able to put so much time and effort into developing resources that are comprehensive, inclusive, and available for free.
- And, lastly, my self-care and narrative coaching (for individuals and relationships) is on sale until the end of January. You can check out my services on my Facebook page (I’m in the process of updating this website to be up to date), or you can just send me an email! A single session ($150) is 10% off, a package of 3 ($400) is 15% off, and a package of 10 ($1200) is 20% off.
There are other projects coming up that aren’t collaborations or events, too. Blog posts and other plans for creating new work, mapping out my content focus for the year. 2017 focused on wholeness and integration, and 2018 will focus on hope. I’m in the process of figuring out what that means, and how to bring that focus into my various pieces of work.
I’m also working on pulling some of my work off of Facebook and making it accessible elsewhere. I’ll be shifting my Tender Year posts into a new blog (and cross-posting with Facebook), and once that’s up and running, I’ll share the link here. I’ll also be posting more of my self-care content onto my Tiffany Sostar blog so that people can read it without being on Facebook.
And, perhaps most exciting for me, two major projects are lurching up to speed:
- the book I’ve been talking about and writing about and thinking about for ages is happening and I’ve started to pull the content together for it, so watch for updates on the 100 Love Letters book coming throughout this year, and,
- I’m 83% certain I’ll be doing the Masters in Narrative Therapy and Community Work this year at the Dulwich Centre (I’ve been accepted into the program, and now I just need to sort out funding – yikes!)
And one major project is just starting to simmer more assertively:
- I’m putting together my speaker event wish list, and starting to think about restarting the UnConference Series and bringing people in for events (Avery Alder is at the top of my wish list, and I’m hoping I’ll be able to bring her in for a weekend workshop on transformative gaming sometime this year).
2018 is going to be about continuing to do what I love, learning how to do it more sustainably and effectively, and working with my communities to develop strategies and resources for resilience and hope. It’s going to be good.
Image description – A screenshot of the front cover of the PDF. Orange text reads “Queerness and Holiday Self-Care: Planning, Coping, Recovering, and Grief” Smaller text reads “A Document Generated Following the December 2017 Possibilities Calgary Bi+ Discussion Group.” There is a decorative red line down the right side of the image.
“What holidays are we talking about?
All of them!
This conversation happened around the Winter Holidays – that stretch of time that includes Hanukkah, Kwanzaa, Saturnalia, Yule, Midwinter, Christmas, New Year’s, and Chinese New Year. But these strategies, suggestions, and situations are relevant to any holiday that includes social pressure to perform joyfulness, to spend time with extended social networks, and to perform a certain type of gender, orientation, or other identity. These pressures can be exacerbated by trauma, grief, or identity shifts. Other holidays that can be challenging in this way are birthdays, Valentine’s Day, the Spring Holidays, and any personally meaningful anniversary.
There can be shame attached to needing self-care around the holidays. These are “supposed” to be cheerful times, where we connect with our families and communities, give and receive gifts and support, remind ourselves of the goodness of humanity, feel loved and loving.
There is so much pressure to conform to these ideas of appropriate holiday cheer, and although we understand that the holidays can be challenging, it’s often difficult to extend compassion to ourselves when we are struggling. And it’s sometimes hard to ask other people to understand when we’re struggling, because they may be invested in having a “good holiday” that doesn’t have space for our struggle.
Depression spikes at the holidays, and we do not have robust “practices of anti-depression” (to borrow a term from Daria Kutuzova, whose work is linked in the resources section). These practices include things like mindfulness, self-care, self-compassion, creating and encouraging unique outcomes (meaning, outcomes that defy our internal expectation of despair and the external expectation of a certain performance of joy – unique outcomes are outcomes that allow us wholehearted, hopeful, and resilient stories without denying our struggle, pain, trauma, and fear). Other practices of anti-depression include creating inclusive spaces and a sense of belonging, and encouraging pleasure, fun, hope, anticipation, and resilience without pasting on a smile that hides our true feelings. This path is much more complicated and challenging, but also much more rewarding.”
Read the rest by downloading the PDF here.
The monthly Possibilities discussions are full of rich insights, knowledge-sharing, and collaboration from within our bisexual, pansexual, asexual, trans-inclusive community.
One of my goals is to create resources that grow out of these generous and creative conversations, so that the work we do in those moments can extend out to join larger conversations about queerness and self-care. One reason for this is because when we are struggling, we have valuable insider knowledge that can help other people who are also struggling – it’s not true that the only people with answers are the “experts” or the ones who have it all figured out. To the contrary – it is often those of us who are actively grappling with an issue who have more direct insight and knowledge to share. This doesn’t mean there isn’t a place for experts or guides, but part of what I hope to accomplish with my work is consistently and intentionally centering the voices of marginalized individuals and communities, and creating resources that honour hard-won knowledge and skills.
In an effort to share these moments of community-generated wisdom from the Possibilities discussions, I’ll be creating a resource most months that documents and shares our collective insights. Anonymity, or naming, is at each participant’s discretion, and at the beginning of the discussion we talk about why I’m taking notes, what I’m planning to do with them, and how people can access the document before it goes public. Any participants who want to look over the document before it’s made public have that opportunity, and there’s a second check-in at the end of the discussion to make sure everyone is aware of what might be shared and has a chance to opt in or out. Confidentiality within supportive community spaces is so critical, and these documents will not contain identifying details (unless participants want to be named or identified).
This document is meant to extend the conversation and also to invite further conversation. Please email me at email@example.com if you have any questions, or would like to add to this discussion.
This document was created following our December 19, 2017 meeting, and is meant to be a resource for the queer community that validates the challenges of holiday self-care as a queer person. There are a ton of coping strategies, resources, validations, and suggestions in here.
I’ll be creating a document like this for most of the future Possibilities discussions, so you can look forward to Winter Self-Care (Seasonal Affective Disorder, dealing with the cold, and winter for weary queers) coming up next month!
Image description – Autumn leaves and berries on nearly bare twigs against a grey sky. Text reads #TenDaysOfGrey #Mental Health. There is a small Tiffany Sostar logo in the top right.
Content warning for discussion of depression, anxiety, self-harm, suicidality.
Today is World Mental Health Day. This is my final post for Bryan McLean’s #TenDaysOfGrey mental health awareness project. You can read my interview with Bryan here. Rather than writing something new for today, I’m sharing a post I wrote four years ago that detailed my mental health journey up to that point. The reason I’m sharing it at the end of the Ten Days of Grey is because when I wrote this post I was in the grey. I am in the colour now, and I appreciate that.
I wrote the post shared here in 2013. Now I am 36, it’s four years later and many things have changed and many things have stayed the same. I am thankful for my 32 year old self writing this. I am thankful for my 28 year old self making it through, for all those younger selves who made it through. I have spent so many years in the grey.
At 36, I am not depressed. (I am often anxious, I am in the middle of a three-months-and-counting fibro flare, and I am experiencing regular existential dread over the state of the world, but miraculously, I am not depressed. Wow!)
It is sort of amazing to reflect on that, because there is a lot going on in my life that would is difficult, stressful, and overwhelming. I am thankful for the resilience I have developed, and I am also conscious of the truth that these sorts of things are not always “overcomeable” and these monsters will visit again. I’ll make them tea, cry with them, and continue surviving. I am thankful for that confidence.
I am also amazed at how strategies shift. When I wrote this original post, I had a few coping skills that I leaned on daily – my extensive lip balm collection is a testament to that. I used lip balm application as an alternative behaviour to self-harming, and it was life-saving for me. But these days, I have only even felt the urge to self-harm once or twice in the last couple years, and I only use lip balm when my lips are chapped. Self-care is such a responsive process – we are always responding, and the act of self-care is an act of presence and awareness. It becomes habitual, but it can never be only habitual. I love (and hate) that iterative, never-ending process. (I also really miss my Patchwork writers! If I ran another six-week poetry writing course, would you be interested? Let me know!)
Here is my 2013 post, edited to remove some ableism (we are always learning!) and to update links.
I’m sitting in Vendome, one of my favourite cafès in Calgary. I just sent out the writing prompt to my Patchwork writers, posted it on the Facebook page, shared it on my personal Facebook, tweeted it, posted it on the Writing in the Margins blog. Most of the time I respond to writing prompts privately, in a longhand journal. If I share the writing later (which I rarely do, outside of workshops where I read my just-written work with the group), I type it up and polish it a bit.
But the prompt today is to write about mental health.
And I am a mental health advocate. So I am typing this response directly into my “add new post” screen, and I am going to hit “publish” when I’m finished. And then I’ll post a link to it on Facebook and on all of my Twitter accounts, and here’s why –
At 13, I went through my first serious depression. I did not know what was happening to me. (If you suspect that you may be going through a depression or other mental health concern, here is a free screening tool. It’s not perfect, and symptoms are not so cut-and-dried for many people – it is a place to start, but not a final word.)
Suddenly everything was awful. There was a pain in my body/brain/heart/soul. I cried a lot. I self-harmed. I scratched my neck and shoulders and hips and belly until I was cross-hatched, red and scabbing. I smashed my head into walls, sometimes until I was dizzy. I didn’t know who to talk to. The only person who knew I was self-harming, the only person I confided in, was my 9 year old sister. It was terrible for both of us, a weight far too heavy for her small shoulders (or my own).
Writing about this time, I feel my chest tighten and my breath shorten, the muscles in my neck knot up – these are the first physical manifestations of anxiety in my body and I am aware enough now, at 32, to recognize them for what they are. I take a deep breath, roll my shoulders, take a sip of water, continue.
In high school, at around 16 or 17, I went through a second (or perhaps just a worsening of my ongoing) depression. This was complicated by the arrival of Sadisty – a very angry, very vicious voice in my head. I do not seem to have a split or multiple personality disorder – Sadisty was just (“just”) my mind’s way of externalizing the intense self-loathing that I was experiencing. Though I feel a deep shame about what feels, to me, like one of the lowest points in my mental health journey, I am also amazed and grateful for whatever it was in me that did choose to externalize rather than internalize those feelings. Sadisty wanted me to die, and I had many moments of suicidality, but I didn’t want me to die. I put all of that negativity into Sadisty, to get it out of my own head, to make those nasty comments come in a voice that wasn’t my own.
I am lucky to have survived high school, to have survived Sadisty and that second/ongoing depression.
(Breathe again, breathe again.)
At 18, I started volunteering at the Calgary Humane Society. I adopted a dog, my soul mate. Tasha. She had separation anxiety and dog-dog aggression. She was anxious, fearful, aggressive. Helping her helped me. Things got better. Sadisty was gone, and she has never come back.
I got married, I got divorced.
My mental health stayed at a consistently low-grade level of self-loathing. Low self-esteem. An at-that-time undiagnosed anxiety disorder. The impact of early trauma, unacknowledged anxiety and low self-esteem on my sex drive led me to believe I was “sexually dysfunctional” (a whole other thing, related but tangential to this post).
(Breathe, breathe. Roll shoulders, stretch wrists, refill water. In my body right now – tightness, tension. Shame, anxiety, fear.)
After my divorce, I went through a third severe depression. Again, I was self-harming. Again, I was suicidal.
I was 28.
I was ashamed.
I felt foolish – this was supposed to be done, part of the horror of adolescence. How could it follow me into adulthood? How could it threaten to destroy the new life I was trying to build for myself? How could I?! Shame, anxiety, self-loathing – there was a toxic mix of emotions and beliefs at play. Fortunately, I was seeing a counsellor and had her support, and the support of my anchor partner. I had started seeing a counsellor when I was trying to get past the sexual dysfunction, and continued seeing her through my divorce and into the depression that followed it. I still see her, and will continue to do so. I recognize now that my neurodivergence is not something I will ever “overcome” – it is part of who I am. It has taught me invaluable lessons, and has helped me become the advocate that I am. At 32, I recognize the value that this neurodivergence has brought to my life.
But at 28, I climbed halfway over my 28th floor balcony, intending to make strawberry jam on the pavement below.
After that, my counsellor helped me come up with an emergency plan.
I made the painful call to my sister, my mom, my dad.
I said, “I am currently depressed. Sometimes I feel suicidal. I am calling to ask if you would be willing to be part of my emergency plan. What that would mean is that if I call and tell you that I am feeling suicidal, you will be available to come and be with me, or take me to the hospital if necessary.”
I had to euthanize Tasha.
My mom was hit by a truck, she almost died.
I experienced post-traumatic stress disorder. The depression got worse. The self-harming escalated.
My best friend stopped taking my calls. Months later, she told me that it had just gotten to be too much – there was something wrong every time we spoke.
Depression, anxiety, other mental health concerns… they can be like bombs, decimating at the point of impact, shrapnel flying everywhere. Relationships can be fundamentally altered or destroyed. Partnerships suffer. The ripple effects of a mental health issue can make the isolation and loneliness, the shame and fear and pain so much worse. Among the conversations that we do not have regarding mental health, this conversation about self-care for caregivers, and balancing the various and sometimes conflicting needs for support is both absent and necessary. It is possible to remain friends with a depressed person, but because we do not ever have this conversation, many people don’t know how.
I came out of that depression.
I became an activist.
I developed an amazing, diverse, wide-ranging social circle.
I learned new coping skills. I breathe more intentionally now. I pay attention to tension in my body. I rarely allow an anxiety attack to escalate to the point where I feel the urge to self-harm. I use lip balm and apply it when I start to feel anxious – I pay attention to the feel, the smell, the taste. I take supplements and get exercise. I see my counsellor every other week, more frequently when things get bad.
I am 32 now.
I am currently depressed.
I wake up in the morning and I feel sad. I feel hopeless. I feel discouraged.
I haven’t reconciled with the addition of fibromyalgia to my life. I miss my dad. I miss my dogs. I am financially unstable, and frustrated by my ongoing mental health concerns. I am immobilized by anxiety on a regular basis.
But I have help. And I have a purpose. I believe that my weakness is one of my superpowers, that my willingness to speak openly about my struggles is part of my activism.
So I am depressed.
I am waiting for it to be over (for now).
I use all my new coping skills. I lean on my friends, as much as I can allow myself, and I breathe. I stretch. I take my supplements and drink my water and have epsom salt baths to help with the physical pain.
It is World Mental Health Day.
And this is my mental health story.
(Image description: A large tree in front of a house, the image is in black and white. Text reads: #TenDaysOfGrey Help promote Mental Health Awareness this October 1st-0th. Post Photos in Grey HELP Share Facts, Stories, Resources, and Donations. Create Awareness for World Mental Health Day October 10th. Use hashtags #TenDaysOfGrey and #MentalHealth)
This October, I’m participating in a new project to increase mental health awareness. The project was launched on Instagram this year by Bryan J. McLean, a Canadian multimedia artist. His music, poetry, fiction, paintings, and web published works include writing such as poetry from The Syndrome Papers, and (1)ne Night Stand, and more recently a Tumblr scifi-poetry project titled, #100days The Open Air : a dark urban fantasy about the light.
His newest project is Ten Days of Grey, which starts on October 1st and runs until World Mental Health Day on October 10th. You can find posts for the project under #TenDaysOfGrey, and you can participate by posting a black and white picture with the hashtags #TenDaysOfGrey and #MentalHealth. If you use these posts to share stories, resources, or support about mental health, you’ll make Bryan’s day.
I saw Bryan’s posts about the project in the days before October 1, and decided to participate. Mental health is such a complex and stigmatized subject, and there is a huge amount of victim-blaming and differential access to resources that complicated how and whether people can access supports.
Bryan generously agreed to an interview about the project.
Tiffany – What inspired the project?
Bryan – You know, I never thought that hard about it. I was upset with some recent career failures and was struggling with health and depression (yet again) this past summer, and then I saw World Mental Health Day was coming up. I started thinking “what can I do to bring awareness with the least amount of effort.” It’s funny to say that, I know, but I had a break down and it takes too much energy right now to pump out creative-anything.
Tiffany – Ableism in activism is so real, and so prevalent. I’m glad you gave yourself permission to do what you could with the resources you have available. I think that self-awareness about limited energy is such a critical part of self-care.
Bryan – I wanted to find something people do every day to share stories and facts. Clearly, the easiest answer was social media, memes, and picture-filters on phone apps. Selfies, food, cat or dog photos, whatever, wherever we are. We’re all addicted, but it’s such a beautiful way sometimes to share how you see the world. And then I considered how much of how I feel just turns to grey when I’m going through a depressive episode. It becomes the lens I see through. I ‘know’ all the good things are over there in the colour, but I’m cold and wet, trapped here in the grey. It’s all you see sometimes, it’s out of your control. (If you’ve ever seen the movie Pleasantville, it feels a lot like being trapped in the ignorant b&w.)
To explain how I got to this point – I’ve been trying to gain a specific full-time professional role for five years, and I’ve been maintaining two skillsets at my job and I’ve essentially been two people at work for five years. It finally caught up with me as I had pushed too long, and ended up essentially in adrenal fatigue. This exacerbated the depression & anxiety that I’ve been managing my whole adult life. I found that the self-care tools I’d developed were no longer working for me.
I collapsed emotionally. It’s embarrassing to say it out loud. It’s embarrassing to say that I was trying so hard & so long that I was exhausted, slept on breaks & at lunchtime, literally crying from exhaustion at work some days, overwhelmed after several months of living like this daily, I finally broke. I mean my brain did. I couldn’t multitask. I couldn’t wash dishes and have a conversation at the same time for months, the focus I required would just break. I couldn’t do complex math / excel formulas in my head any more, which used to be like making a sandwich for me. I couldn’t remember a conversation that just happened… or even what groceries I was supposed to pick up. Things you take for granted just remembering them. And it was very much like I was locked in a room full of doors and I knew the information I needed was just on the other side and I couldn’t get there. It was out of reach.
I’m slowly leaving my current career to restart my undergraduate & Masters work in fine arts (painting) with a minor in psychology, so I can move to work in art therapy. It’s hard, but not as much as the pain I realized I would feel spending another twenty-five something years doing something that isn’t going to help people the way I need to help them. I have the gifts (creativity & compassion) and I should use them to help adult learners.
Tiffany – Congratulations on making the choice to change your career. That’s hard (speaking from personal experience!) The experience of your burnout sounds so difficult. I know that losing executive function was one of the most challenging things about my early fibromyalgia journey – it felt like such a personal failing. And it definitely pushed me into a depressive episode that was resistant to all of my previously-effective tools. Since then, or even before then, what has your mental health journey looked like?
Bryan – I’ll try to sum that up. It’s difficult to condense the ups and downs. Since I was a teenager, I was melancholy. Just sad, not suicidal. I didn’t know it was depression. People get sad, they have regrets, lament over things, feel lonely. It didn’t feel special. I moved away for college so I spent a lot of time just alone in a new city where I knew very few people. You get lonely, but I’ve always been introverted, I like my own company. But, I’d be irrationality sad for days… a down feeling that wouldn’t leave.
Over time, I moved cities & provinces, had relationships & friendships, breakups, makeups. All the while, I just had dark days. It wasn’t like the world was ending, but I’d feel heavy or in pain. I’d keep going though, it’s what you do. Everyone feels like this, right? Also, I used to think I had insomnia but it’s actually something called bi-modal (sleep a few hours, wake up for 2-4 hours, and go back to sleep). So, I’d struggle with sleeping, overthinking, but usually I’d feel rested. I’d say my depression grew overtime though. I got more tired.
One time I set my kitchen on fire, overthinking & distracted, I’d left the plastic kettle on the stove burner. It wasn’t all that dramatic but prompted me to see my physician and I went on meds for a year, because of anxiety, depression and cognitive issues. Side effects were the worst sometimes, but it helped me get focused and back on track.
I spent a lot of time trying to avoid having to return to medications though; it’s the right thing for some people, but I wanted to do all the right things, if at all possible, to never need them again. I took up mild running, tried yoga, stopped eating a lot of take out and just cooked at home. I studied meditation and things on psychology. I’ve seen several naturopathic doctors and psychologists over the years when I needed direction and a neutral person to talk to. I wanted to stay grounded. It took a lot of work, but it’s help me be balanced. It’s a struggle to act or feel normal sometimes.
I don’t know if all of that really helped the way I thought it would, but I put in the effort of doing the self-care I needed for pretty much my adult life. I’ve been on meds again. Had another rough year. Saw my doctor, my psychologist. Was again diagnosed with anxiety & depression. I’m usually a funny, intelligent, thoughtful, and friendly person. I’m not faking that part of me, however some days it takes a lot out of me to just ‘be myself.’
Tiffany – You’ve taken that struggle and used it as motivation to start this project, which I think has the potential to reach a lot of people. What do you hope the project will inspire or accomplish?
Bryan – The worst thing someone recently said to me was, ‘everyone has anxiety, everyone gets depressed.’
It was the most unkind thing you can possibly say to someone in crisis. It makes me sick to think that is the message being shared by the public. These types of words end lives. We are all people and we all deserve kindness.
Yes, people get sad, people get worried. Yet they don’t get diagnosed with an illness by a physician and feel irrationally worried and suffer prolonged sadness for days on end.
Not everyone has high functioning depression like I have managed; I can mask my symptoms and just ‘deal with it’ but sucking it up for years, is like watching a plane that you’re flying slowly head into a mountain. You will crash, it’s just a question how badly.
So, I guess I am hoping this project will inspire awareness. Most people are lucky and don’t have to live with being sad or worried too often, or deal with the mania that bipolar people experience, or deal with schizophrenia, Alzheimer’s, dementia, or other cognitive issues that plague their quality of life. Yet these issues happen. Almost no one is trained to deal with the situation when mental health issues arise, especially when they happen to us personally, or in our close relationships.
No one really wants to talk about it, because what is there to say? Often mental health is a silent kind of disease, the myth is that it is ‘best ignored and left for doctors to decide how to deal with it.’ Issues like this though, they fester when ignored. Patience, kindness, compassion, are skills that many people don’t have, and no one really knows what to say. They don’t see it is a part of your health, they don’t see it like a broken arm – they act like you are weak or lazy, they don’t believe you… Yet those are the moments we need to be listening to each other more compassionately, not less. We need to be open to solutions. Sometimes it’s a matter of talking to the right counsellor or health professional.
Not everyone needs help, but no one should go through these things alone, and there are so many local resources & people out there that can help and are properly trained to help.
If you don’t know what to say,
If you don’t know what to do,
find a professional.
Hopefully sharing facts and sharing stories will keep giving some exposure to mental health. Even just knowing that one in three Canadians will be diagnosed with mental health problems in their lifetime, will maybe ease the pressures of doing things all alone, and seeking help.
Tiffany – That’s great. You’ve talked about different groups of people – the people who experience mental health issues, the people who don’t (and often don’t know what to say), and the professionals who might be able to help. Who do you hope will get involved in the project?
Bryan – I don’t really want to ‘own’ this idea, it’s meant for others to pick it up, so even if it’s small, I’m hoping it speaks to people to slow down and know it’s okay to seek help. Dealing with mental health is not something you have to do alone.
I was really just doing this thing for myself, it’s something I needed to hear so many times in my life, I forget sometimes that even if a small voice speaks out, maybe that idea can help others understand or seek help.
You don’t have to be in a massive crisis to talk something out. We get to being in a crisis by not talking about and not listening/believing, not finding the right professional to connect with, not having that one person say, ‘hey why don’t we talk this through.’ No one wants to be a burden, but problems like these don’t go away. They almost get stronger if you set out to ignore them.
Tiffany – What else feels important about the project?
Bryan – The simplicity. Just imagining the world in Grey for a few days might help people find a way back to the colour.
Tiffany – You talked about the tools that you used to use suddenly not working when you experienced burn out and depression. Have you found new tools that work?
Bryan – It’s been a long journey, so I want people to know, I didn’t wake up one day and have it all figured out. I’m saying that because I think it’s important to know that you will struggle trying to find out what works best for you and what fits your lifestyle; you will grow and change, and growth always hurts in some way.
I studied a lot of things, experimented a lot, talked to a lot of people & professionals. I sought help and I didn’t expect someone to magically ‘fix me.’ Sometimes I felt I was doing this workout / yoga wrong… eating the wrong vegan things… or doing that spiritual technique badly… felt confused about certain concepts… but the truth of the matter is that it was (and continues to be) a journey of the internal self.
What helps me:
- Ask for help. Ask anyone. It’s so hard when you don’t know what you need. But talk about it with a trusted advisor/friend and then a professional.
- Learn to sit quietly, to sit with yourself, and to quiet the noisy mind. Don’t worry. This takes practice, but every bit helps. So, doing Zazen (seated meditation) at minimum five minutes a day, but best 20mins when you wake up & 20mins before bed. Rhythmic breathing.
- Studying Shamanic meditation helped me. Learning to see different perspectives and ‘journey’ to discover goals, problem solving, and energetic healing.
- Studying Buddhism & Quantum Physics. I love complex patterns and how things connect, quantum mechanics tells that story. I wanted to study the nature of things, understand myself or my place in the universe or something like that, so I was looking at ethics & science. I guess I was trying to stay grounded, because spiritually is the inner path, the self… It seemed very selfish to only look inside knowing there is an outside world to experience. You can get a big head full of delusions when looking at the true nature of what being a person means, thinking you know all the answers, how everything is connected… so, I guess I wanted follow a good base set of rules of investigation. Science is a quest for truth and testing those facts. And then I read this book, The Quantum & the Lotus. It’s a conversation worth having and it took a good look at where Buddhism & Science meet. They are both the quest for truth and testing that truth, incorporating new findings and accepting that maybe what we think is true can change. It’s important to be open when you’re on any kind of journey, so these were good lessons to learn.
- Free Weights. Yoga. Spin. Dance. Being active with intent is meditative – it distracts the mind. It’s ironic when depression hits, it becomes this huge wet blanket in your life, stopping the desire to be active. Literally everything is harder & heavier. You shouldn’t force it if you need a rest day, but I try really hard to be active at least once a week, preferably five times a week. (Recent research supports this.) But even 15 mins of workout is literally better than nothing. I am an introverted person, I don’t like exercising in public or classes, but finding that sport or workout thing that makes you motivated can help a lot.
- If I can’t sleep, I do pushups or planks, downward facing dog, until I am tired, which frankly won’t take long. You can also look up breathing techniques for helping sleep, like the 7 second method.
- If something is stopping my brain from getting sleep, I get up and deal with it. I try not to lay there grinding my brain. Get up, clean the house, write down the issue, and try to come up solutions. You’ll never get to sleep just lying awake. It only gets worse. You might not solve a problem but it’s better than lying in the dark hating yourself or others. I try to take action the next day on those problems to solve by making a list and making deadlines to fix what is bothering me.
- I cook for myself. I reduced / stopped eating take out, and reduced my salt & sugar intake, and my alcohol intake (it’s also sugar). Learning nutrition from a Naturopathic Doctor, Nutritionist, or your personal doctor can also help – getting help to make a plan for your physiological needs. Single. Person. Is. Different.We all have different needs. For me, it was important to move towards being vegan/vegetarian. Requiring animal protein is a myth, it’s not the only way to get protein, not the only thing a body needs, and there are healthy ways to incorporate both your current lifestyle and what your body needs together. Listen to your body. Listen to a real doctor, not what the internet thinks you should do. Drink water, your body needs it.
- Camping, Hiking, Canoe/Kayak, & Sit with Nature. Turn off the noise. Sit at a river. Stare at some trees. Walk your dog or someone else’s dog, but be outside without your headphones in. Listen to the tress talking. Mindfully acknowledge the Now that is all around you. This helps me a lot.
- Write poetry or short stories. Paint. Draw. Craft. Bake. Sing. Make music, make things, and share them. It doesn’t matter if it’s bad, it doesn’t matter if no one ever sees it. The act of expression is the most important exercise, because there are things that words cannot express and stories that need telling.
- I also use a sleeping mask all the time, and a full-spectrum light panel in the winter.
Bryan’s Recommended Resources:
- Zazen (Seated meditation) I have studied soto zen Buddhism for a long time, the best resource you can find is a very very short book called Buddha in Blue Jeans by Tai Sheridan
- My top two fave books on Buddhism are
- Sit Down and Shut Up by punkrock buddhist Brad Warner
- Peace is Every Breath by Thich Nhat Hahn, an activist and Vietnamese Buddhist Master
- Shamanic Studies: Secrets of Shamanism by Jose Stevens, a practical guide to journeying & goal setting
- Finding Ultra & Plant Powered Way by Rich Roll, on athleticism & become vegan with his researched cookbook
- Wil Wheaton’s video about his mental health
- This video is really helpful – I had a Black Dog, his name was Depression
Tiffany’s Further Reading List:
- For folks who want to explore shamanism but are concerned about cultural appropriation, this article goes into quite a bit of depth.
- Accessing professional care can be difficult for people of colour, but this list of podcasts by therapists of colour is a small step towards meeting that need.
- Rest for Resistance is another great resource written by QTPOC.
- 7 Cups is a free therapy resource for folks who can’t afford professional help.
- Exercise and physical activity can be challenging if you’re dealing with chronic pain, and chronic pain can exacerbate mental health issues. This post includes some tips (and also cute cat gifs).