(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).
This is the second part of a Patreon reward post series for Dylan. At the $10/month support level, I’ll write you a post on the topic of your choice for your birthday, too! Consider heading over to my Patreon and signing up if you want to support this work!
You can also read Part One – Narratives of Quitting.
This series of posts attempts to address the topic Dylan posed. They said, “I’m so tired and stretched thin across multiple projects so I apologize if this is not helpful. It’s kind of hilarious that this is about self-care and I’m not really doing awesome on that front atm. I was thinking about self-care as it relates to quitting because I’ve made a number of difficult changes over the past couple of years that required working through these ideas. I gave up on many hobbies as a kid because I didn’t want to face the horrible anxiety that came with pursuing hobbies: fear of public failure or embarrassment, fear and awkwardness of interacting with new people… I started to think of myself negatively as a quitter and that has nagged at me as an adult such that I have a difficult time quitting or changing directions once I set myself onto a path. But quitting can be such a vital part of self-care because sometimes we do need to change directions or leave to protect ourselves.”
This second part of the series looks at the factors that influence when/whether/how/what we might quit (or not quit).
There are so many factors that can influence whether or not someone decides to (or is forced to) quit something, or, equally complex and common, factors that influence whether someone decides not to (or is unable to) quit something. I narrowed these factors down to a core set, with the understanding that this list is incomplete and that these factors blend together into a nearly infinite range of potential influences.
I don’t think it’s possible to talk about the factors that influence quitting without addressing the way that trauma impacts, long-term, our response to threat situations (and to situations that look like they might be threatening, whether or not they actually are threatening). It’s too easy to approach the topic of quitting and self-care from a rationalist perspective, distanced from personal histories of trauma, and when we talk about quitting only in terms of the “rational” or “reasonable” response to influences or situations, we end up contributing to the stigma and shame that already weighs heavy on trauma survivors.
When we quit, how we quit, why we quit, whether we quit – our histories inform these actions in a major way. (And each of our histories influences this – family histories, success and failure histories, and trauma histories. But this section is about trauma histories.)
These trauma histories (which include any Adverse Childhood Experiences or ACEs, such as abandonment, abuse, childhood poverty, or watching a caretaker struggle with addiction, abuse, or financial/emotional/mental instability or illness) echo through the rest of our lives, and although I sincerely believe that we are both the protagonists and the narrators of our own stories, I also recognize that our stories happen in contexts that we do not, and cannot, control.
So, how do these histories inform how/when/why/whether we quit?
I mean… how do they not? But for the sake of this post, we’ll look at four common responses to threat, how they can be influenced by trauma histories, and how they can influence a decision to quit.
Fight, flight, freeze, or fawn are four common responses to threat.
When you’re making a decision about whether/when/how to quit, if you’re responding to a (real or perceived, internal or external) threat, and if you have a trauma history (as so many of us do), then your ability to access each of these responses will be impacted. In lots of ways.
Fight – When we feel threatened, one response is to fight.
Making decisions about quitting outside of a trauma history, the story of fighting might be one of the protagonist recognizing an injustice or other problem, assessing their available skills and resources or determining that the situation is untenable and has to be challenged, and fighting it. These stories are the stories of people who didn’t “just” quit, and they are often among the most highly praised stories.
However, the story of a trauma-infused fight response might look more like the protagonist “lashing out” and “making the situation worse” – these stories are often far less acceptable, and when the person fighting is marginalized – a woman, femme, disabled, fat, poor, neurodivergent, racialized, addicted, or otherwise marginalized person (whether they’re fighting from a place of trauma or not) – the fight response is often used to blame them for any harm that they experience.
Trauma-informed fight responses can also be hard to control, and the flood of adrenaline can make it difficult to explain why we’re doing what we’re doing. It is hard to fit trauma-informed quitting decisions into an acceptable Narrative of Quitting, and this is particularly true when the response is a fight.
Flight – Another response to threat is to run away.
Outside of a trauma response, flight stories are often easily understood and accepted, because flight is non-confrontational and clearly acts to end a threatening situation. These stories can even sometimes be retroactively rescued into a Triumphant Quitter narrative, especially if the protagonist is marginalized. (Marginalized folks are expected to flee and punished for fighting against a threat, and vice versa when the person is not marginalized. This means that someone with privilege – a white, male, abled, cisgender, straight, wealthy, educated, or otherwise privileged person – will often feel a significant amount of shame for fleeing rather than fighting. Fleeing is often perceived as a sign of weakness, and groups that are already considered weak can flee without challenging the dominant narrative of who they are, but they can’t fight. And people who are perceived as strong can fight, but they can’t flee without challenging that dominant narrative of strength.)
When flight is a trauma-informed response, and is a panicked cut-and-run that seems, to an outside eye, disproportionate to the situation, there is a lot of shame attached to the flight response (even though it is often a very reasonable response to threat!).
Trauma histories that push us towards flight can make it difficult to stay in situations even when staying might be a better choice.
Freeze – Another response to threat is to freeze. For trauma survivors, this might look like dissociating, disconnecting, or mentally checking out. In a moment of freezing, we are unable to quit and unable to move forward. Being stuck in a freeze response can end up making the choice for us by default, either because we keep moving forward on the energy of our inertia, or because we’re forced to quit when we’ve stopped taking productive actions.
Freezing fits tidily into the Weak-Willed Quitter narrative, and into cultural narratives that lean hard on victim-blaming to explain away the long-term and pervasive impacts of our violently racist, sexist, classist, ableist and otherwise oppressive culture. According to bootstrapping ideology, doing something is always preferable to doing nothing, and freezing is, in many ways, the least validated response and the hardest to rescue into an acceptable narrative.
Fawn – A final possible response to the threat is to fawn, or try to appease the threatening person. This is often the safest space for someone who is under threat to stay, but it can feel corrosive to be submitting to a threat and appeasing rather than escaping harm. When we have used this coping strategy to keep ourselves safe, it can be challenging to change the pattern and we can feel a huge amount of shame whenever we slip back into submission-for-survival. This coping strategy also gets slammed in self-care and psychology settings, framed as codependence, anxious attachment, and other problems that frame this as an unreasonable and dysfunctional strategy. Although it’s true that this can become a maladaptive strategy, especially once we’re in safe relationships, the blaming doesn’t help. If this is how you cope – if you submit to other people’s needs, act as a “people pleaser” and make your choices about whether or not to quit based on what other people with power want, it’s okay. Like every trauma-informed decision, it can be hard to explain and hard to understand, but it is also a valid survival strategy. And if you want to learn how to relate in other ways, that can happen without blaming and shaming yourself for what you needed when you needed it.
We have a lot of cultural narratives around fear, and they’re everything from Frank Herbert’s famous “fear is the mindkiller” to Gavin de Becker’s “the gift of fear.” Everything we want, according to the platitude, “is on the other side of fear” and we are admonished to “choose love, not fear.”
And fear is a huge influence when it comes to our decisions about when/why/whether to quit.
We might be afraid of success (or failure), and quit to avoid getting the dreaded answer to the question “do I have what it takes?”
We might be afraid of what it will take to keep going, and quit.
We might be afraid of being seen as a quitter, and not quit.
We might be afraid of disappointing ourselves, our partners, our friends, our professors, our communities, our parents, and not allow ourselves to quit.
We might be afraid of burning out, and quit.
Some fears tell us we’re in danger, and listening to those fears, and quitting before we get hurt, is wise. Allowing ourselves to identify, understand, and act on those fears is an incredibly difficult and valuable self-preservation skill.
Some fears tell us that we’re running low on resources and we need to quit before we run out entirely – the fear of failure, for example, can seem like a fear that should always be “overcome” or pushed through, but there are times when the cost of failure is too high, and listening to the fear is the wisest choice we can make.
Fear can also be an indicator that it’s time to keep pushing – there are times when we feel fear and it’s the fear that accompanies a challenge, rather than a threat. This fear says “this is scary but keep going! We’re on the right path!”
How do you tell the difference?
How do you tell the difference if you deal with anxiety?! (One definition of the difference between fear and anxiety is that fear is a response to a situation you are currently experiencing, and anxiety is a response to a situation you are anticipating. Anxiety is about the possible-but-theoretical future, and fear is about the present and immediate future. This is obviously not a perfect definition, because wouldn’t that mean we feel anxiety, rather than fear, about failure or success? I would say that if the feeling is stopping you from starting a project, it’s anxiety – reacting to a theoretical. If it’s impacting whether you continue or quit a project, it’s fear – reacting to an ongoing situation. I also think that it doesn’t really matter what words we use, as long as we know what we mean, and these hairs might not always need to be split. Another definition, which I personally find very helpful, is that fear is situational and passes when the situation changes, and anxiety is pervasive and lingers even after the situation changes.)
Y’all… I do not have any easy answers for this one.
I know that I feel fear and anxiety on a nearly daily basis, and panic less often but still regularly, and that my fear has become an excellent and reliable (if irritating and painful) guide. The fear that tells me to keep going feels different in my body – it’s not the hollowed out fear related to threat that tells me to stop, go home, turn back. It’s a crackling electric fear related to challenge, and it has the power to generate change and growth.
I only know the difference sometimes, and often only retrospectively, and I only know it after years of practice (and years of failure – pushing into the wrong fear and staying in damaging relationships, for example, because I thought the fear was wrong, or giving up at the first flutter of fear without giving myself time to learn which flavor it was).
Fear of failure, and the equally stifling fear of success, are two that dog me constantly. These are the fears that influence my decision to quit working on a writing project before I submit it, or to create marketing plans and not act on them, or to look into Masters programs and not apply. These fears are so real.
Dylan’s original question included references to “fear of public failure or embarrassment, fear and awkwardness of interacting with new people” and those fears are also so real, and can push so many of us out of hobbies, jobs, communities, and even relationships that we might sincerely enjoy and want to engage with. Sometimes it is true that what we want is on the other side of fear, but when we’re looking at fear as an influence in our decisions to quit, we need to be compassionate with ourselves. We are not fearful for no reason, and we are not fearful because we’re broken, weak, or foolish. Our fears come from somewhere, and we can’t just set them up as enemies to be overcome – often we need to sit down with that voice of fear, pour a cup of tea, and really listen.
What are we afraid of?
Can we address that fear compassionately and intentionally?
Once we’ve listened and understood our fears, we can make better decisions about whether to quit.
There is so much shame associated with being a quitter. You didn’t have enough guts. You weren’t smart enough. You weren’t strong enough. You weren’t tough enough. You just weren’t enough. If you had been, you could have stuck it out.
Even when we quit for the best reasons, and even when quitting is the right choice for us (as it often is – none of us can continue in every venture we begin indefinitely, there isn’t enough time and energy for that! And we grow, we change, we quit so that we can start something new) still, shame is always waiting to pounce.
And fear of that shame often stops us from quitting when we need to quit.
Shame is a silencer, distancer, suppressor – not only does it keep us tied to things we want to quit, and distant from things we want to embrace, but it also keeps us quiet about the experience.
Access to Resources
Access to resources is, in some ways, the most challenging and frustrating influence over decisions to quit. When we have to quit because we don’t have enough money to continue, or we don’t have enough energy to continue, or we don’t have enough support to continue – it sucks.
It sucks a lot. And it happens a lot. It happens to a lot of people for a lot of different reasons.
For folks who are disabled or chronically ill, sometimes we lack energy and that can fuel a lot of shame, but often we also lack finances because of un- or under-employment, and we lack support because of pervasive ableism.
For poor folks, particularly people who are dealing with generational poverty (which disproportionately impacts Black and Indigenous communities), there is often not only a lack of money, but also a lack of time and energy because poverty often means working multiple jobs, or working long hours for low pay. Poverty is also a significant social determinant of health, which means that folks living in poverty are also often dealing with health issues that sap time and energy and money. And poverty, particularly childhood poverty, can result in long-term trauma. Despite all the bootstrapping mythology in our cultural narratives, poverty forces so many people to quit so many things that they love and excel at, and it’s not because they are weak-willed or lack determination and stick-to-itiveness.
For trans, queer, racialized, or otherwise marginalized folks, that same intersection of frequent un- or under-employment, plus lack of social supports and a lot of stigma and pervasive oppression (especially in the form of microaggressions in work and play spaces) results in quitting things that they might otherwise enjoy and excel at.
On the other hand, gaining access to resources – through scholarships, living wages, more equitable distribution of domestic and emotional labour, supportive social spaces, and thriving communities – can enable people to not quit, or to quit in ways that feel right for them.
Gaining access to social supports and employment opportunities might allow someone to quit a job that isn’t right for them but that they’re staying in for the financial security. Gaining access to scholarships, housing opportunities, or food security may allow people to continue in post-secondary educations that otherwise would be out of reach.
We can collectively make a difference when it comes to this – we can vote for politicians who support living wages, daycare programs, and other social supports. We can put our money directly into the hands of people who need it, through crowdfunding and platforms like Patreon. We can advocate for accessibility and inclusivity in our spaces – particularly if we have privilege and our voices are more easily heard by people in power.
Access to resources also intersects with harm reduction, since a lack of resources can make it nearly impossible for folks to quit habits, addictions, or subsistence work even if they want to, and even if they would be happier and more fulfilled if they were able to. But, again, our bootstrapping narratives conveniently ignore the way that lack of access to social and material resources places barriers in front of people.
It’s easy to feel hopeless when it comes to access to resources. And I fully reject an individualist narrative that says this issue can be solved at the level of the individual – in order to make a real difference when it comes to access to resources, we need to fundamentally alter the social structures that uphold inequality. But just because it will take policy changes, doesn’t mean we are powerless.
We can push on this one, so that more people can keep doing what they love, and more people can quit doing what hurts them.
We hope things will get better.
We hope that they’ll get better if we quit, and hope influences us to quit. To seek something new.
We hope that they’ll get better if we stay, and hope influences us to not quit. To try and improve the situation from within it.
When we quit from a place of hope, often it feels liberating. Doing anything from a place of hope feels better than doing the same thing from a place of hopelessness or fear. (Now, if only hope weren’t so intimately tied up with access to resources, trauma histories, and social inequality…)
Self-efficacy is our belief in our own ability to successfully meet our goals or challenges and to generate a positive outcome as a result of our actions.
We can build self-efficacy through mastery experiences (having the personal experience of attempting something and succeeding at it), vicarious experiences (witnessing someone like us attempt something and succeed at it – this is why representation is so critical!), verbal persuasion (encouragement and support from influential people in our lives), and imaginal experiences (visualizing yourself attempting something and succeeding at it – there is interesting new research into increasing self-efficacy using VR and witnessing a personalized avatar succeed at a task).
Physical, emotional, and psychological states also impact self-efficacy.
If you’re interested in building your own self-efficacy, you might be interested in the gamification series of posts that I’ll be running weekly starting in October.
Self-efficacy impacts whether/when/how/why we quit because believing that our actions have the ability to result in a positive outcome is a huge factor in whether we feel empowered to keep going, or to quit when it’s right for us. Feeling helpless and ineffective often means we are more likely to quit out of despair and discouragement, and also more likely to not quit for the same reasons.
Want to be a writer?
Want to start your own business?
Change the world?
First of all, good luck. I think you’re amazing, and I count myself as one of you. Idealism and stubborn hope and the desire to make positive change in the world is beautiful.
And also, how are you going to pay your rent?
When are you going to get a real job?
What qualifications do you have?
Who gave you permission?
Who gives you permission?
The social pressure to get a “real job” is huge, and it intersects with issues of fear, access to resources, shame, and trauma histories. But outside of those intersections, the social element, and the social narratives around what types of work are valid is so huge.
Social pressure can keep us stuck when we want to quit – can keep us in marriages, in jobs, in degrees, and in communities that no longer serve us. And social pressure can force us out when we want to stay, from all those same places.
We are not supposed to “waste” our talent, and so if we’ve ever done something well, we should keep doing it.
And we are supposed to grow up and get a real job, and so if we dream of alternative jobs we meet a significant amount of skepticism (internal and external).
“Don’t quit your day job” is excellent advice, and horrible advice.
“Chasing our dreams” is also idealized and vilified, and it can be great advice when someone tells you to keep going, and it can be terrible advice when they tell you to keep going.
Social pressure and social support are also often linked. When we’ve received social support, we often feel indebted to our communities and their desires or expectations or fears can put a lot of pressure on us.
And, while it is true that this is your story and you are both the protagonist and the narrator of your story, it is also true that we live within families (chosen and given), communities, and societies that influence and are influenced by our choices.
Part Three of this series – The Things We Quit and Self-Care for Quitters – will be going up on my Patreon later this week, and will be available publicly a week after that.
October 23 – December 4
$125 / $60 for Patreon supporters or returning participants (sliding scale available)
Online course – all content delivered in PDF and email format, with an optional weekly Google Hangout and a closed Facebook group for participants.
Email me, comment here, or message me through Facebook to register.
This course is for the heartbroken, the burnt out, the sad and the afraid. It is a course for bruised and bleeding hearts. It was not originally supposed to be – when I mapped out year of content, Autumn was always going to be emotional self-care, but I had intended a more lighthearted course. But the world, in the 10 months between designing the year of courses and running this course, has turned more overtly and explicitly brutal. There are a lot of broken hearts in my community.
We are grieving, collectively, for what feels like the loss of our future. Climate change, far-right ideologies, economic instability, and the chaos that existential dread can create within relationships – so many of us are dealing with so much. Loss, and the loss of hope, and the loss of joy, and the loss of stable ground under our feet.
Six weeks is not long enough to heal a broken heart, transform a trauma into something bearable, refill the cup or relight the candle that’s been burned out. Six weeks is certainly not long enough to address the great grief of climate change, political upheaval, economic collapse. So this course is not about healing our collective, or our individual, grief.
Instead, this course is about feeling our way into the grief, loss, trauma, and heartbreak so that we can do the long work of healing individually and collectively over the next months and years. The goal of this course is to offer tools and skills and a safe space for talking about how we begin to recover. How we find our way back to ourselves, so that we can find our way back to community, so that we can find our way back to hope.
This world needs us.
Those of us who have broken open and broken down in response to the pain in the world and to the losses in our own lives – our empathy and sensitivity is needed. Self-care and community care and deeply linked, and sustainable self-care is only ever the result of awareness, compassion, and intention in our actions. Those of us who feel deeply and who are struggling right now have already been practicing emergency self-care. That’s how we got here, searching for tools and answers and skills. We already have the ability to bring awareness and compassion and intention to the self-care that we practice individually and that we model and share within our communities.
My goal for this course is to help foster that awareness, compassion, and intentionality in your self-care practice. To give you a few new tools and a solid base of support and scaffolding to continue healing, growing, and renewing yourself.
The course has two sections.
In the first three weeks, we will work on mapping out our current emotional state, identifying our emotional needs, and finding the edges of our remaining positive emotions. For many of us, heartbreak, trauma, and burnout cut us off from our feelings of joy, hope, and self-efficacy (our belief that we can make positive changes within our own lives). The first three weeks will focus on connecting back to those feelings, without demanding that we “stay positive” or find the “silver lining.”
In the second three weeks, once we’ve established a thread of connection back to our joy, hope, and self-efficacy, we’ll start working on recognizing and responding to the needs that originate in our feelings of loss, heartbreak, trauma, and grief.
The course will use three core strategies:
Narrative – If you’ve taken any of my previous courses, worked with me one-on-one, attended my workshops, or read my writing, this one won’t come as a shock. Narrative therapy is my jam. I believe that using narrative – understanding our lives through metaphors of story, seeing ourselves as the protagonists of our own stories, and giving ourselves the space to tell our own stories – can be life changing. We will definitely be talking about narratives of loss, grief, heartbreak, and healing in this course.
Mindfulness – The self-awareness and compassion piece of the self-care puzzle requires that we spend some time being present with ourselves, observing what’s happening and what we’re thinking, feeling, and experiencing, without judging ourselves for it. In order to tell our stories effectively, we need to know what we’re trying to tell. That’s the mindfulness piece.
Gamefulness – This one is new to my courses, and I’m excited about it. We’ll be using some of Jane McGonigal’s research into how “living gamefully” can facilitate healing and growth, and trying out some of the games, challenges, and exercises from her book SuperBetter.
Over the six weeks, you’ll develop stronger self-awareness, self-compassion, and self-care skills.
It’s going to be great.
(This post was available on my Patreon last week. If you’d like to get access to posts early, consider supporting me!)
In August, I asked my Facebook community – Where do you find hope in media lately?
I asked the question because hope has been on my mind. Or rather, the lack of hope. The need for hope. The challenge and pain of trying to hope in a world that seems so soaked in dystopia and pain and fear and hate.
Hope, hopefulness, hopelessness. What hope is, and what it isn’t, and what it does and doesn’t do for us.
I’ve been thinking about reading Joanna Macy and Chris Johnstone’s Active Hope but so far it remains just a thought. Hope feels like a necessary and dangerous topic, an exposed nerve for so many of us in the current political, social, and economic climate. (On this note, I am considering attending this retreat in October, recommended by the same person who recommended the book to me. I haven’t figured out the finances, but if you have $250 and can be in Alberta and want to attend, let me know and we can do a retreat together!)
For a while now, I have felt deeply hopeless, hopeless down to my bones. I have been swimming in existential dread. I struggle to see a way forward for humanity – at all times, I think we’ve overstepped and overstayed, embraced a political and economic framework that is fundamentally unsustainable, and supported it with a social framework that isolates and harms so many people, and in the dark times, I think there’s no way back. I have felt, for a while now, that the end of the road is close.
I have handled that deep hopelessness by holding onto smaller hopes. I’ve found a metaphor that works for me, based on that idea of the road – I think that there’s value in walking to the end of the road together. Doing it intentionally. Doing it with self-awareness and with compassion. I think that there is something powerful and meaningful and hopeful about the idea that we can offer whatever comfort and self-care and community care and survival strategies we can, despite the end of the road looming. I feel sad for the world and for all our unmeetable potential, crushed under a drive towards hierarchy and violence and exploitation. But I also think that we can do what we can, with what we have, for as long as we are able, and that’s worth continuing on for. That’s the safety net that keeps me from falling off the cliff.
I am also wary of any self-help advice that includes weaponized positivity – the idea that if you aren’t positive enough, don’t look for the positive, don’t find the silver lining, then you’re at fault for your situation – and I think hope falls into that category all too often. I don’t want to contribute to that body of work that constitutes a vast and crushing arsenal of weaponized positivity. I am not here to tell you that you just need to hope – just need to vibe higher, think brighter, seek the light. Nope. In my heart of hearts, I think we’re screwed. And even if we aren’t, the fear and the pain and the hopelessness – it’s real. It’s so real.
And I also believe that when the car is spinning out, it helps to look for the clear road rather than the trees. I think that we will have better luck taking on the role of death doula for a dying species if we find some way to hope within that. If we find some clear road to aim for – some awareness, some intention, some compassion, to bring to this critical work of loving ourselves and each other through this time.
So, I do believe that there is value in curating our thoughts, words, and media intake. Not in demanding that we always ‘think positive’ or find the silver lining, but in recognizing when we need an infusion of hope, joy, humour, or encouragement and when we notice the need, seeking those things out.
And so, for those moments when you need to find some hope, here are a whole bunch of suggestions from fellow travelers, in some cases paraphrased and edited. (With additional links added by me in the brackets, in case you’re like me and like to read reviews before you invest in any media.)
Where do you find hope in media lately?
Jim: Muppet movies. The theme of pretty much all the old Muppet movies is, “we can achieve our dreams, if we work together.”
(I enjoyed this essay from Bitch Media about feminism in the Muppets, and if you’re an academic nerd like me, you might enjoy knowing that Kermit Culture: Critical Perspectives on Jim Henson’s Muppets exists.)
Samantha: Steven Universe. It validates and celebrates everyone. Poly, straight, Bi-Gender, people with trauma…everyone. And everyone gets to be a hero.
Bob’s Burgers. It’s a show about good people and while they’re weird and the world can be cruel to them, they are ultimately resilient because they have each other.
The Unbeatable Squirrel Girl – It’s just madcap fun. With a diverse cast and some serious heart. It’s not a new way forward for the medium but it never fails to make me smile.
Ms Marvel – Teenage Muslim-American gets super powers and then has to balance heroics with family life? It’s basically the end point of the Spider-Man formula. Really, really good.
The Adventure Zone – a D&D podcast about three adventurers. It’s a humour-based show but grows into so much more. And while the early goings can be rough, they get very good at representation and combatting problematic tropes.
Rose Buddies – a Bachelor Fancast. While I will never ever watch The Bachelor family of products, there’s something about two people who love it and love each other that is oddly fulfilling. They engage with the problematic elements and it might not be for everyone but it’s my second favourite podcast.
(There are lots of articles about why Steven Universe is rad, but I like this one from i09, this one from Liverpool Geek Girls, and this very thoughtful essay about POC-coded Pearl from Black Nerd Problems.
There are also lots of articles about why Bob’s Burgers is brilliant, but I love this one from Decider about why Tina, Gene and Louise are the feminist role models we need.
Samantha’s picks are all, honestly, really fantastic and I had a great time finding articles about them.
This one about Squirrel Girl shares the same enthusiasm I had for the comic when I first discovered it.
And G. Willow Wilson, who created the new Ms. Marvel, is my hero. I saw her speak at Mount Royal in Calgary, and her quote “There is not always a way out, but there is always a way forward” became the cornerstone of my coaching practice. This article about Kamala Khan is fantastic.
This post about why Adventure Zone is fantastic is also great, but watch out for spoilers!)
Katie: Not conventional media, but ASMR roleplay videos on YouTube have been an effective way for me to escape the existential dread.
Rick and Morty for helping me laugh through the fear and pain.
(According to The Nerdist, the opening premise of Rick and Morty is “like Sliders but good” and that’s some high praise in my secret Sliders-loving heart.)
Richelle: Dogspotting and We Rate Dogs. So many good doggos, and the fact that there are beings on this planet that are beacons of joy and love and floof who continue to be happy gives me hope. Even if I’m ready to give up on the human race, there are adorable dogs who will never bring about the apocalypse.
(This post about how doggo memes can teach us about consent and inclusion is one of the most hopeful and encouraging I’ve read in a while.)
Jon: Video games can be a source of hope too (depending on the game). Often the stories can be hopeful (like a lot of the Lego games, games about rebuilding after an apocalypse, some of the final fantasy games). Even just the concept of games can build hope, though. You are presented with a challenge. To get over the challenge you have to have hope that it’s possible. You work at it and eventually you make it through.
Video games are often overlooked when it comes to media; they’re written off as a quark of a particular sub-culture that a lot of us shy away from (sometimes for good reason). I’m really glad to see some of the most recent game designers come out to make games important to them (and us), though. They’re definitely artists and sometimes they create truly hope-inspiring pieces.
Seeing the work that some game designers pull off despite the general toxic nature of gamer-culture also gives me a lot of hope.
(Jon suggests Never Alone as one of his favourite examples of hopeful games. And I have been reading SuperBetter by Jane McGonigal, which is all about how game playing can increase resilience. I recommend both the book and the app. I’ve also been tinkering with a blog post about videogames and self-care for about six months, so, someday that’ll happen. Someday. Haha. *headdesk*)
Andrea: Body positive Instagram. Tess Holiday, queenkim_nyakimm, fat women of colour, curvy_curvy_cosplayers, curvycampbell, and gabifresh. I haven’t seen a lot of disability inclusivity in these BUT most are on their game with racial and body shape diversity. Using Instagram for body positivity is a very new thing for me, tbh. It was mostly food, travel, and protesting. Not by any rule but I think mine started with Tess Holiday and I was like “oooohhhh this is such an emotionally productive way to use Instagram.”
And I find hope in radical books that destabilize systems of oppression. I’m currently reading “Mongrel Cities” by Leonie Sandercock. It was written in 2003 so it is dated but it was already addressing the fear and the Othering inspired by 9/11. I’m not that far in but already it’s talking about planning for communities that acknowledge differences as strengths. The author actually says about herself that she remains a hopeful theorist even when our visions of urban Utopia fail endlessly, that she seeks to keep going and try new things. She looks largely at the age of migration in the western world and shares her criticism and hopes of what our cities and societies can be. She’s a professor at UBC who leads the Indigenous planning concentration and she focuses on storytelling and narrative in planning practice. I fangirl over her (this is the planning program I’m trying to get into).
Alexis: The bible. The concept of a higher purpose and God is the only thing that gives me hope.
I’m part of a fundamental religious group. So we adhere to the bible. It’s our source of guidance. And everyone who bashes alternative lifestyles and hides behind the bible to justify their hate – they’re not acting like the Christ I know.
I’m a Jehovah’s Witness. I have gay friends. I have trans friends. I am friends with recovering addicts and people who choose to work in prostitution.
I believe in harm reduction and the freedom to do what you want/need to be happy.
If that includes God/the bible – great.
If not. That’s great too. I aim to imitate Jesus and his love (yup I know that sounds hokey). But he was kind and he showed love and didn’t condemn people.
I can tell you that if I didn’t believe in God, I would be an awful person who was extremely hopeless. Whether what I believe comes true or not, I’m kinder and happier. I feel hope. I’m not overwhelmed by what is in the media. It’s scary out there. But I would rather live and die with hope in my heart than believe that the world is going to implode at any minute.
Michelle: APTN, Aboriginal People’s Television Network – they aren’t perfect but at least give us a voice without colonial talking points
Patricia: Pod Save America. It’s written by Obama’s writers and communications team. I feel like they are intelligent, well informed, experienced voices who are able to read and critique what occurs in the media very logically. Also, they are sweary sometimes, which is necessary and awesome.
(Another) Katie: Not really hopeful per se and definitely not perfect, but I find when I’m overcome with existential dread that revisiting media from my childhood helps calm me down and cradle me. The Harry Potter franchise has been good in that regard – it’s like comfort food in book form for me.
(I have really enjoyed Harry Potter and the Sacred Text, a social justice-informed podcast that explores the Harry Potter books. And there’s research to support Katie’s love of returning to cherished media, as this Mary Sue article outlines. I won’t link to the study directly, because it’s called “The Temporal and Focal Dynamics of Volitional Reconsumption: A Phenomenological Investigation of Repeated Hedonic Experiences” and that sounds pretty dry, even to me. Okay, fine, I will. Here it is.)
Jess: I have songs I wrote to sing to myself when I’m full of existential dread. One of them is actually on soundcloud, I hope it’s helpful to someone else!
Justine: Lately, I’ve been fascinated with Jay Z’s 4:44 roll out and the videos and footnotes he’s released. They’re beautifully made and really fascinating.
It gives me hope because a central theme throughout is that artists need to be in control of the process involving their artwork, which is really cool thinking that Tidal might operate more as an (elite) artist collective and inspire other streaming services to organize along similar lines.
Other than that, comedy is a still big one for me. Political comedy has been really great lately in calling bullshit, which is really validating. Personally, I recommend:
1) Full Frontal with Samantha Bee
2) Late Show with Stephen Colbert
3) The Daily Show with Trevor Noah
4) Late Night with Seth Meyers (Amber’s segments are SUPER good)
Lastly, for a feel good, hope for the future feeling, I recommend “Homecoming King” by Hasan Mihnaj (Netflix). It’s a really well done stand up that talks about his experiences growing up as an Indian American Muslim, and it’s really well done, and I found it really powerful.
(This New Yorker article agrees with Justine’s assessment of Homecoming King.)
Sierra: The Rise: Creativity, the Gift of Failure, and the Search for Mastery, a very interesting book by Sarah Lewis. The author explores pushing past and learning from our mistakes and failures. It is also very well written. Sarah Lewis does an incredible job of highlighting the deeper fiber of perseverance and positive humanity.
Stasha: This page called Just Ravens on here. This lovely lady lives up north and shares photos and stories of her relationships with a group of ravens. Most recent one I liked was a raven waiting on her car for her to get off work, so the raven can hitch a ride on her side mirror and get some snacks. There are some treaty 7 people in the group talking about ravens that I know irl. So, everything about it just gives me hope and joy.
(Ravens are amazing, as GrrlScientist attests.)
This is a Patreon reward post, and the first draft of this post was available to patrons last week. At the $10 support level, I’ll write a self-care post on the topic of your choice during your birthday month. And at any level of support, you’ll get access to these (and other) posts early.
This post is for Shannon, who is one of the strongest and most courageous people I know. She deals with chronic anxiety and other health issues, and yet is always doing as much as she can with the tools and resources she has available. She is an inspiration to me. Her requested topic was sensory overwhelm – what it is and how to handle it.
I decided to take this prompt in a different direction than my usual, and drew a comic for her rather than writing a post. There’s a longer post on the Patreon in the first draft, so if you want my long and slightly incoherent ramblings about what sensory overwhelm feels like for me, you can check that out as a patron.
After thinking about it, though, I think the comic is better without the explanations. I realized that one of the ways I try to process and mitigate sensory overwhelm is by over-thinking it, analyzing it into the ground, intellectualizing it, because being present with it is just so effing uncomfortable. But that over-analyzing, over-thinking, over-intellectualizing gets in the way of getting through the experience.
When I lose myself in sensory overwhelm, it’s often in those moments of trying to think myself out of my body. Sometimes it works better to just try to stay grounded while the overwhelm overwhelms, to let it happen and trust that there’s another side to come out on, to breathe even when the sound of the breathe is too much, to push my shoulders down from my ears even when the movement is too much, to close my eyes and know that I am alive, I am okay, I will be okay, even when everything is coming at me amplified and awful.
So, here’s my comic. This is how I experience sensory overwhelm.
Panel One: A disjointed stick figure, with none of the limbs connected. “I feel disconnected and out of sync.”
Panel Two: A stick figure stands and covers their ears. Yellow and red lines and wiggles surround their head. “Sound are overwhelming.”
Panel Three: A stick figure stands. The sun is in the top left corner of the panel. Red and yellow starbursts cover the stick figure’s head. “Light hurts my eyes.”
Panel Four: A stick figure stands. Green wiggly lines surround them. “Smells are so strong and bad.”
Panel Five: A stick figure stands, surrounded by a spiky red field. “I feel like one giant exposed nerve.”
Panel Six: No image. “Sometimes I lose myself for a while.”
Panel Seven: A stick figure sits cross-legged. Blue and green concentric circles radiate out from their torso. “Eventually I can breathe and centre.”
Panel Eight: A stick figure stands. “And then I am back in sync.”
Jen Donovan lives in Eugene, Oregon, and is a mental health therapist. She posts frequently about her experience with chronic illness (mast cell activation syndrome), and her journey towards wellness. She blogs at Skunk Speaks.
She generously shared her experience and insight as part of the July theme week on the Sostar Self Care Facebook page – System Failure: Self-Care for Sick Days (and weeks, and months).
Tiffany – Can you share (as much as feels comfortable) about your experience with becoming ill and coming to terms with what was happening?
Jen – This was really hard for me because the disease I have is pretty rare and the symptoms are often fairly vague and hard to make sense of. So, for the first six months or so of having acute symptoms, I really thought that I was “going crazy.” Additionally, a symptom of the disease is panic attacks, which further confounded what was physiologically happening to me. I was lucky that I had a doctor at the time who happened to be familiar with the disease and was able to diagnose me. Just having the validation, that I was not just having somatic delusions, was a really important initial step in coming to terms with what was happening.
After that, though, came the second part of “coming to terms” – actually accepting that I have a rare, incurable disease. Again, I was lucky that I had exposure to alternative and holistic healers in my community who helped me realize that although the disease cannot be “cured,” it can be “healed” through major lifestyle and diet changes, among other things. The distinction between “healing” and “curing” has become an important one for me in my process of acceptance.
I acutely remember one day in early February, looking over the four pages of things that an herbalist recommended I start doing to treat my illness, including an extremely stringent diet and major lifestyle changes, and I was just crying and crying and crying. Even being very disciplined with these changes, it can take years to see a significant effect. I had a horrifying moment of realizing my life would never be the same. I felt like I couldn’t do it – it was too much – I would just be sick forever and eventually die. And at that moment of total terror, I had this incredible experience of complete surrender. I felt my “ego” just fade away and I just totally submitted to a journey towards wellness, no matter what it entailed. That was a really important moment in my acceptance.
Tiffany – I wanted to ask a bit more about the idea of surrender – you talk about that as being such an important process, but our culture is so resistant to the idea of surrender. Sickness/illness is something we are supposed to “fight” but in your words, it’s not about fighting illness so much as surrendering to a journey. Can you add to that? It’s just such a narrative shift that I wanted to expand on it.
Jen – Yeah, the idea of surrender has been big for me. I think one idea that has become a major core belief for me is that, generally speaking, the body is infinitely wise. If it’s doing something harmful to itself, it’s because something in the environment is not working for it. It’s not being given the space it needs to take care of itself. Symptoms are messages – our body telling us ‘hey this isn’t working!’ So to “fight” against illness is to disrespect the messages our body is giving us about how to heal. Again, this way of thinking about it isn’t going to work for every person in every situation. But for me what has worked is to accept that the healing is in the wound. That’s a phrase I read from my horoscope by Chani Nicholas at the beginning of the year and I cannot get it out of my head. So instead of rejecting my symptoms I’ve been trying to turn towards them, and accept that my body is doing something important, something meaningful. If I can surrender to the body, work with my symptoms as a partner to investigate why it is struggling and suffering, I’ve made so much more progress than when I was stuffing myself with medications to try to stop the symptoms. This is what surrender has been like for me.
Tiffany – How do you handle the social aspects of chronic illness? Especially the impact of illness on relationships.
Jen – This one is weird and I’m still struggling with it. The first major one was re-navigating my relationship with my primary partner. I realized early on that many of the things we would do together as a couple to bond were no longer accessible for me. I can’t eat at restaurants, I can’t drink alcohol, I can’t do recreational drugs, I can’t go backpacking or even camping for more than a night really, I can’t do super heavy impact play or other s/m activities. I had a couple of weeks where I worried that our relationship would collapse because all these things we had structured our relationship and intimacy around weren’t options anymore. It was scary for awhile. But I eventually recognized that if he decided to leave me because I couldn’t do these activities anymore, then he wasn’t actually dating me for “me,” but for the things I did. And that ended up not being the case. We have had to have a lot of intentional conversations about it, but we have been able to restructure our relationship around activities we can still do. And in some ways our relationship has grown deeper and more intimate because we’ve been forced to do this, and get to know each other in new ways. We have done a lot more things like more spiritual bdsm, tantra exercises, walks and gentle hikes, and we still go out dancing sometimes – I’m just sober now – and we have a great time.
I have found that this illness has given me a strange opportunity to really learn who my true friends are. It was surprising to see who stopped talking to me, or inviting me to events, once I became sick. I think some of it has to do with similar to the above, not being able to do the same things I used to. I also think some people are just really uncomfortable around someone who is chronically struggling. The reality is that even on good days I’m not really “good” – my body is extremely sick! And there are days when I feel very sad and discouraged. I try not to be excessively negative – but I’m also not going to pretend that everything is fine. And I’m learning who can handle that and who can’t, and having to adjust my social connections accordingly. Part of me feels bitter or rejected at times, but part of me sees this as an opportunity to focus my energy on people who can be there for me in a deeper way.
Tiffany – What has been the most helpful strategy you’ve found for keeping yourself moving forward? And, how do you handle those times when you can’t? (I’m asking this one because you always convey so much honest exhaustion and discouragement but you rarely come across as hopeless or despondent – it’s really encouraging and inspiring, and I’m wondering what keeps you tethered to resilience.)
Jen – Honestly, I don’t feel like I have any other option. I think this goes back to that “surrender” moment I had back in February. To give up is to just accept illness, accept death. I have to be real with myself that I will be dealing with this disease for the rest of my life, but that’s where the difference between “healing” and “curing” comes in. I’m not trying to cure myself. I’m just trying to heal. I’m trying to give my body space to take care of itself. And I deeply, deeply believe that bodies know how to take care of themselves if they are given the proper space and environment to do so. So to give up, to not continue to move forward would be to reject this deeply held belief I have and I have just seen too much powerful evidence in the world to do that.
Another thing is that I’ve managed to find some spiritual purpose to the experience, which I think has been essential to me. Here I am, 27, struggling with a rare disease and terribly ill. And yet – I’m sober, I have more fulfilling relationships now than I ever had, I’m eating and taking care of my body better than I ever have before, I’m better at setting boundaries around my health and self-care than I ever have before – my entire life is now centered around wellness and healing. I’ve made these changes because I’ve felt like I’ve had to – and yet… if I hadn’t gotten sick the reality is I probably never would have made these changes. I’ve had visions during meditations recently where it was explained to me that this illness had to happen in order for me to progress in this way in my life journey. I don’t think everyone needs to or can find greater purpose in their illnesses. But it has been a very profound realization for me – that somehow in sickness I have found wellness.
And lastly, there are days when I don’t feel resilient, I don’t feel like I’m moving forward, and that sense of despair and terror sets in. I cry and I wail and I feel like I’m dying and nothing can help me. But that’s part of the process too, in a way. Those fears and feelings are real and to suppress them would be toxic. So, when they come, I really feel them. Just really wallow in them. And usually if I let myself really sob and wallow for awhile, the wave naturally passes and my thoughts naturally start turning to more optimistic thoughts. So I guess that’s a part of what helps me keep moving forward too.
Tiffany – I also wanted to ask more about spirituality, if you want to talk about that. That’s such a difficult and fraught topic for so many people – I know that a lot of folks in my community have come out of harmful fundamentalism, or have rejected religion for one reason or another, but I also know that there are a lot of folks (sometimes the same ones! sometimes others) who are searching for some kind of spiritual connection or process. What has that journey been like for you?
Jen – Well, I’ve come from the opposite situation, lol – my dad is a fundamentalist atheist so it’s been a journey for me to find spirituality rather than get away from it!
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