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.”
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 one’s for Stasha, who has been one of my most active supporters and cheerleaders. I appreciate her comments and insight so much. She was also the inspiration for the #100loveletters challenge that I’m currently running, and her willingness to be visible in her experience of working towards self-love is empowering an ever-widening circle of participants in the challenge and beyond.
Her requested topic was visibility, and the complexities of doing self-care while invisible or hypervisible.
These are two sides of the same issue –
Being invisible – having parts of your identity illegible and unrecognizable and unacknowledged by the people around you – can make you feel crazy and alienated from your own experience. Invisibility can become a deeply damaging, traumatizing experience of being gaslighted by the entire society around you.
Invisibility takes many forms. Often, invisibility brings the double-edged sword of ‘passing’ – we are invisible (in whichever of our identities is unwelcome in the context) and that invisibility causes incredible internal harm and pain while also granting us conditional privilege as we appear to belong to another, more welcome, more acceptable, more safe, group. Passing as straight. As cisgender. As white. As neurotypical.
There are so many identities that become rendered invisible in most contexts. Where the assumption of normativity – the assumption that we fit society’s definitions of “normal” – is stifling. Crushing.
Queer invisibility – the harm felt by queer folks in heteronormative spaces, where we are automatically assumed to be heterosexual. Our queer identities are erased by the assumptions of the people around us. It hurts. We have to choose, each day, in each interaction, which hurt we want to experience – the pain of erasure, or the battle of fighting to be seen. Do we come out? Is it safe to come out? What are the consequences of coming out?
Trans invisibility. The experience of trans men and women who ‘pass’ – who are perceived as their gender and assumed to be cisgender – often have their transness rendered invisible unless they come out, and this can be both painful and comforting. Sometimes at the same time. Is it safe to come out? Is it safe to get close to someone without coming out? (Passing is a hugely contentious and fraught issue.)
Non-binary trans invisibility is a whole other issue, and one that I can speak to more personally. I am ‘read’ as a woman in every context except those ones where I have explicitly and decisively come out as genderqueer, and even in those situations, the illegibility of my identity is often clear. I’ve said the words “I am genderqueer – I do not identify as either a man or a woman” and have still found myself lumped in with “us girls” or “the ladies” or whatever other assumptions of womanhood people have, even by people who have heard me come out and have acknowledged the validity of my identity. They are trying to see me, but they just… can’t. Don’t. Won’t?
Femme invisibility within the queer community – the assumption that women with femme gender presentations are automatically straight. Also within the queer community, bisexual invisibility – a huge issue that remains pervasive.
Invisible disabilities, both physical and mental. Invisible neurodivergences, and the incredible pressure on neurodivergent communities to ‘pass’ as neurotypical. (The fact that we consider it a marker of success if an autistic kid is able to get through a class and “you’d barely even know they’re autistic!” is such a problem.)
And other invisibilities, invisibilities of experience – the invisibility of addiction and the experience of being sober within intoxication culture (many thanks to Clementine Morrigan for that phrase), the invisibility of childhood poverty in academic and professional contexts, the invisibility of trauma.
One of my heroes is Amanda Palmer. In her book, The Art of Asking, she said that so much of her artistic life has been spent saying, over and over, in song after song, performance art piece after performance art piece, in every way, again and again – “see me, believe me, I’m real, it happened, it hurts.”
I saw her live at one of her kickstarter house parties, and she was talking about the experience of being a woman and being tied to reproductivity – that question of children being a defining question. Another person in the audience, a genderqueer person like me, but more brave than I was, pointed out that not everyone with a uterus is a woman, and not every woman has a uterus – that this experience is not tied so tightly to gender. Amanda Palmer blew past the question, erased it, made a comment about how if you have a uterus then you are a woman and you will have to deal with these questions.
It wasn’t malicious, but it was violent – invisibility is not neutral, it is not passive. Rejecting someone’s effort to be seen is never a neutral act. Being made invisible in that way, particularly after making the effort to be seen, hurts. It hurts a lot. It took me a few years after that to be able to listen to her music again, and I just started reading her book this week.
(It’s a separate issue – the necessity of making space for imperfection. The story is relevant, but the healing process is a post for another time. Amanda Palmer is not perfect but I still find so much value and even validation in her work. This is one of the most exhausting challenges of having invisible identities – we still need community among the people who can’t, or who won’t, see us.)
So, how do you do self-care while invisible?
And what about self-care while hypervisible?
Hypervisibility is a separate but related issue.
Hypervisibility is when, rather than being assumed to be part of the normative group, you are visibly Other and that otherness becomes your defining characteristic. It is as much an erasure as invisibility – you lose the nuance of your whole and complex self. When people see you, they don’t see you – they see your visible characteristics and don’t move past that.
Most often, hypervisibilities are written on the body. The colour of your skin. The sex you were assigned at birth. The size of your waist. The movement (or not) of your limbs.
I don’t experience hypervisibility very often – I’m white and thin, with class, language and educational privilege that helps me blend into most environments, and my disabilities are all invisible (unless I’m trying to be physically active). When I do experience hypervisibility, it is in contexts where my assigned sex or my gender presentation are conspicuous – primarily cis-hetero men’s spaces.
Hypervisibility brings the threat of violence. Racist, transphobic, homophobic, and sexist violence can all be sparked by the wrong person seeing you and seeing you. Violence against fat and disabled people is similarly tied to hypervisibility. Violence against homeless or visibly addicted people is similar.
Hypervisibility doesn’t offer the option of passing, and the fight is often chosen for you – rather than choosing between the harm of erasure and the harm of exposure, hypervisibility means constant, constant exposure. They don’t make an SPF high enough to protect from that.
It is possible to experience hypervisibility and invisibility at the same time – to be a Black queer femme. To be bisexual in a wheelchair. To be non-binary and homeless. In those moments of compounding erasure – one identity hypervisible, every other identity erased – self-care becomes even more challenging.
Self-Care and Visibility
It is an incredibly difficult thing to be a loving mirror for yourself when all around you are mirrors that either don’t see you, can’t see you, or only see some parts of you. But that is the core of self-care and visibility – the ability and the necessity of finding a loving mirror within yourself and within your communities.
Find that one friend who sees every part of you.
Be that one friend who sees every part of you.
Get to know yourself.
Get to know every part of yourself – the invisible bits and the hypervisible bits. Write it down. Make a list of all the things you are, and solidify yourself for yourself.
It can help to take a page from narrative therapy and write yourself a small Document of Authority that states who you are, and to keep it with you as a talisman in situations when you know you either will be invisible or hypervisible.
Another self-care strategy is to practice recognizing, naming, and countering the gaslighting that comes with both invisibility and hypervisibility. Start to notice when people make statements that assume you are something other than what you are, or that flatten you down to a single identity. Note them, name them (out loud or just to yourself) and counter them with the truth.
Speak yourself into being, and into complexity.
It is the hardest thing in the world.
It’s why representation matters so much.
But I believe in you.
I know that you are real, and that what you have experienced is real, and that what you are is real and valid.
You are the expert in your own experience.
You know who you are, even if you can’t access that knowledge consciously yet.
Hypervisibility: How Scrutiny and Surveillance Makes You Watched, but Not Seen, by Megan Ryland at The Body is Not an Apology. This post is brilliant, and is part of a two-week series that ran on the blog in 2013.
The 5 biggest drawbacks of hypervisibility (and what separates it from the constructive visibility we need), by Jarune Uwujaren at Resist. Another great post that clearly outlines the harms of hypervisibility and the double-bind of being expected to be grateful for being seen.
Hypervisibility and Marginalization: Existing Online As A Black Woman and Writer, by Trudy at Gradient Lair. Trudy’s work revolutionized my understanding of misogynoir and the specific issues facing Black women. Her writing is excellent, and this post is no exception. (She no longer blogs at Gradient Lair but has generously kept the content available there.)
Queer Like Me: Breaking the Chains of Femme Invisibility, by Ashleigh Shackleford at Wear Your Voice. There is so much to love in this post (and many of the posts on this site).
10 Ways to Help Your Bisexual Friends Fight Invisibility and Erasure, by Maisha Z. Johnson at Everyday Feminism.
The Importance for Visibility for Invisible Disabilities, by Annie Elainey. I rarely link to videos (because I dislike watching videos most of the time), but Annie’s are absolutely worth watching. Her engagement with disability, and so many other issues, is fantastic.
(I am so thankful for the work of women and femmes of colour who have generously offered their insight and wisdom and emotional and educational labour to create these resources. Many of these content creators and sites are reader-funded, and if you’re in a position to support them, that’s rad!)
(This post is part of the #100loveletters challenge, which started June 21. The challenge is open to anyone, at no cost! It’s really easy, and really hard – for 100 days, from June 21 to September 29, or 100 days from whenever you start, write yourself a love letter. It can be short, it can be long, it can be a stick figure or a sonnet or a flower or a song. It can be written down, or it can be an act of love. Share your pictures, comments, thoughts, and stories in the hashtag #100loveletters on Facebook, Twitter, Instagram, or in your blog, and find a community of people practicing a summer of daily self-love, or participate offline. You can also enter to win a hand-written letter by emailing me. I’ll be drawing a random name every twenty days over the course of the challenge. You can also join the email list to receive writing prompts, encouragement, and success stories.)
I interviewed Stasha at the beginning of the 100 Love Letters challenge, since she was the inspiration for the challenge.
Now, three weeks into the challenge, I was lucky enough to interview her again on the topic of writing ourselves love letters when we’re in the middle of feeling shame, anger, fear, or self-hate. This is a topic that has come up again and again for challenge participants, and it’s worth digging into. So, here we go.
Stasha – Question the first?
Tiffany – Yes! Excellent. In our first interview, we talked a lot about the beginnings of the project, and what it offered you in terms of that deep well of self-loving actions and accumulated evidence – I loved the image you shared of having that big stack of love letters to look back on.
We’re into the #100loveletters challenge now, and quite a few people have sent me messages asking about how to write a love letter when you’re hating yourself. My answers have mostly been “just start with whatever you have available, even if it’s just a walk or a post-it note or a mug of tea” but I wondered if you had wisdom about this, since you’ve been through the full 100 days.
How do you write – WHAT do you write – when you’re feeling self-hate?
Stasha – I’m just looking through my letters because I felt a lot of self-hate during the process…
One example, I was feeling really rejected, which is a feeling that I can get easily stuck in. So, I tried to think of the opposite of rejection and wrote those words around my heart. Another time I did the same about interrupting, because I was trying to listen better.
Tiffany – Oh, I like that a lot. That fits with the Dialectical Behaviour Therapy skills I’ve been working on in my own life – looking for opposites, and intentionally choosing an opposite and incompatible word/thought/action.
Stasha – Oooo yes dbt forever! I love the story of dbt creation and I try to fight the professionalization of the system of dbt. (Tiffany’s note: The New York Times recently ran a profile on Marsha Linehan, the creator of DBT. Her work is particularly important because it came out of her own experiences of borderline personality disorder – still such a stigmatized condition – and extreme self-harm. If “nothing about us without us” is your rallying cry, her work is worth exploring.)
Stasha – I externalize things like anger monsters for my coping/healing work all the time, so I used that to try and remind myself of good. Example: I get to be in the same world as this tree. One externalizing technique about love letters is that even if you were really disappointed in someone you loved, you could probably still summon a love letter for them. I kept going because I wanted to show myself the same care.
Tiffany – One thing I’m thinking about, that I’m not sure how to talk about… So, forgive the awkwardness/uncertainty of this.
Stasha – Uncomfortable is required to learn, so I’m ready.
Tiffany – But I have had times in my life when a project like this would have hurt so much, because I just could not summon anything resembling a love letter for myself. I think that some of the people who have been watching the project develop, and have been wanting to participate, may be in that space. Right now, I can do this challenge. I have spent years working on self-compassion and on being able to act with love even when I don’t feel love.
The reason I find this so tough to talk about is because I want this to be a tool that is accessible to everyone – we can all show ourselves care even when we don’t feel it! We can all invest this time in ourselves! – but as I speak with people, and as I think through my own history, I am recognizing that there are times when this really isn’t possible. And I want to acknowledge that, without framing it as failure, and also offer some hope or some alternatives.
Do you have any insight or thoughts for people who maybe want to do this now but are really struggling with it?
Stasha – Yes. This is so important. Me too.
One thing that I do, that many professionals define as a symptom of trauma, is pick up treasure like a crow. Bits of glass or rusty things or worm-eaten wood.
Tiffany – I love that image. Corvids forever.
Stasha – In my love letters the symbol of the crow is recurring and was a way for me to have this as a positive image while I gathered that summer’s treasures together in a copper pot.
Nowadays I get rid of the treasures by giving them to the river in the fall, before I kept them. I knew that I was going to reengage this coping mechanism, even though I had not done it for awhile. So, I summoned my corvid power and listed the pros of crows when I couldn’t list them about myself.
Tiffany – Oh, I really love that. Having something you associate with yourself (like the crow for you, for me it would be fae folk), that you can list beloved or positive traits about even when you can’t list them about yourself.
Using your patronus / alter-ego / animal friends in your love letters
- What do you associate with yourself? If could be an animal, a character, an idea, an object. Think of the Patronus idea from Harry Potter – something powerful, associated with who you are as a person, that can be summoned to protect you.
- What are your favourite things about the animal/object/idea you associate with yourself?
- What makes that creature/concept/thing so cool?
- What is one story or myth or memory associated with that animal/object/idea that you treasure?
Stasha – When I felt broken or as if I had a giant hole in my spirit I would weave paper and fabric into a letter. I learned that one year at Equinox Vigil, a really neat Calgary event about the need for public mourning of grief of all kinds.
Tiffany – That sounds like a valuable tool, too. (And I am thinking a lot about sensory stuff as I build the summer course – registration is still open for one more week! – I love how that practice of weaving a bandaging or healing letter would blend tactile and visual senses with fine motor skills – bridging left and right brain selves, and helping both from a narrative perspective and also from a physical perspective.)
Stasha – Yes to mind melding our own minds!
I used the metaphor of growing A LOT. And home. I wanted to be home and safe when I was with myself. Big difference between with myself and by myself. That meant confronting the shit.
One love letter was a rock with a hole through it from persistent water drops.
Tiffany – Oh, that is lovely. And I love how fluid and flexible your definition of love letter is. I think that’s something I could definitely improve for myself. Or, maybe to put it more gently, that could be an invitation to more flexibility in my own thinking.
How much time did you spend on this project per day? Did you find the time commitment overwhelming? How did you carve out and protect the space for that?
Stasha – Ha! Gentle is good. I usually would write the love letter in the morning, so it could be based on what I needed for that day, and then at night I wrote 3 things that weren’t terrible about that day. I love structure for my healing, so those bookends really helped me to accomplish my other goals.
Tiffany – I like that idea. I might try that for myself, because the last-thing-at-night love letters don’t feel so good for me – they feel like avoidance and dismissal, you know? And it’s funny – even though I feel that, I haven’t shifted it. But I like your idea of bookends and of the love letter giving you what you need for the day.
Stasha – I showed myself evidence that other people loved me, when I felt less able to do it myself. I drew stick figure me and cut out my name from birthday cards to show myself that I was surrounded by love.
Dear Tiffany, If you need some material for your love letters you can look into concepts such as Radical Hope, which you demonstrate every single day. You could interview someone who loves you about your great qualities, even though it is scary. – Stasha
Tiffany – I love that so much. Thank you!
I have been struggling with that concept of “deserving” all week. I have been avoiding writing my letters – I usually write them ten minutes before bed, long after my brain wants to be done, and if I weren’t running this challenge publicly, I don’t think I would be doing them. They feel indulgent and … “bad” – selfish, ridiculous, foolish, arrogant.
Stasha – So write them to the fairies and fae. Write them to the crows and elf leaders.
Tiffany – Yes. I love that idea! And maybe we can invite others to help us see ourselves through a loving mirror, when we’re not able to do that for ourselves.
Interview Questions to ask someone who loves you when you’re struggling to write your own love letter (you can use this template as-is, or adapt it):
Hi, I would like to ask you some questions. It’s totally okay if you’re not able or don’t have time to answer. This is challenging for me to ask, because I’m struggling with not liking myself a lot right now. I’m asking you because I trust you, and I trust your insight and your ability to see me clearly. I know that you love me. I appreciate you taking the time to answer these for me.
- What comes to mind when you think about me?
- What is your favourite memory involving me?
- Can you think of a time when I did something well?
- Can you share a story that demonstrates something you admire or enjoy about me?
Tiffany – Do you have any other thoughts on the topic of doing this project while experiencing self-hate?
Stasha – I do all my projects while experiencing self-hate. I think a shocking number of us do. I think I drew brick walls 3 times in my letters, not as barriers but as symbols of the cumulative effort required to get that shit voice* to also listen to compassion.
Tiffany – It is so common. So, so common. I think you’re right
Stasha – My 100th letter I painted a life size tree, while naked. I took lots of pictures of that PROCESS, because that was the gift to myself: the wonderful process of fucking up, exhibiting symptoms, lying to myself about my worth, and listing 1-3 non-crap things per day. Otherwise known as messy healing, the most sacred of love spells.
Now this process of seeing other people struggle within this same process, is so validating and healing. Because sometimes I forget how awesome I am or the amazingness of the things that I have tried. Just like you and you and you. It is really nice to try stuff together.
Tiffany – One thing that comes up repeatedly in the narrative therapy training that I’m doing, is the idea that people need to know that their experiences and knowledges can help others. Maybe one motivation for getting through the 100 Love Letters challenge is so that in a year or two years or ten years, when we have someone else in our life struggling, we can draw on these experiences and offer them hope and help.
Just like you are doing now, because you ARE amazing and badass and wise and resilient!
Stasha – Awwww thanks friend. Pulling knowledge out of pain is the original chocolate chips* out of shit! Just like YOU are doing now. Part of my 100 love letters process was to do it for me instead of for other people.
Tiffany – One thing that I did a few years ago was to give myself stickers for every positive or useful thing that happened or I did in the day. I think it was a similar process. It helped me start to see myself as competent and worthy, at a time when I did not experience myself as either of those things. I don’t even know where I got that I idea, but I used it to claw myself up out of one of the darkest holes I’ve been in.
I think that we are often so much more resilient, and so much more wily in our survival strategies, than we give ourselves credit for.
Thank you for sharing your wisdom about this! And for sharing this project. It’s a good one!
Stasha – Wily af! Thank you for building on it, there has been so much learning, and it is early still in the process!!
Tiffany – I know!! We are not even a fifth of the way through, and already so much wisdom and generosity has been shared. I’m excited to see the project continue!
Stasha – Way to grow!
* Stasha’s Chocolate Chip Wisdom (note on this section for discussion of eating shit)
Stasha – Now. Everyone loves chocolate chips.
Ok not everyone, but many do.
I describe this process [of finding self-love in the middle of self-hate] as picking chocolate chips out of a pile of shit.
It has been my direct experience that kids who are coping with abuse from primary caregivers, particularly neglect – are really, really good at picking chocolate chips out of piles of shit.
So we like chocolate. But when you are picking your chocolate out of shit, you are going to also eat a lot of shit.
And this shit will get inside you. And this shit will give you a mean belittling voice that will tell you that you are no good.
Sometimes this shit will destroy you or tell you to destroy yourself. It will always tell you that you are no good. That you don’t deserve 100 love letters.
I think though that I found a loop hole here, because the shit will never tell you not to write 100 love letters, only to not write them to yourself!
It is sad because everyone except us knows that we deserve this love. That shit gets in the way.
(Running the #100loveletters challenge is possible because of the amazing support of my community, especially my Patreon patrons. If you’d like to keep this work going, consider checking out my Patreon, or liking my Facebook page, or following me on Instagram.)
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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I attempted my first personality-style quiz!