by Tiffany | Feb 26, 2017 | Coaching, Health, Identity, Intersectionality, Neurodivergence, Patreon rewards, Personal
Dressed up as a Gloom Fairy – one of the self-care strategies that got me through university.
This is a Patreon reward post. At $5 per month, you, too, can have a personalized post on the topic of your choice during your birthday month!
Red Davis (one of the first people to back my Patreon! *heart eyes*) is a current student and good friend. He asked for “a post relating to disabilities and mental health disorders within a university, professional, or social context; recurring themes of self-shame, embarrassment, and self-imposed solitude often debilitate many in higher learning or work situations.”
I will admit, I struggled with this post.
I wanted to write it, of course. Helping people navigate these hostile contexts while existing on the margins is exactly what I want to do in my coaching and self-care resource creation. Not only that, but it’s a reward that I’ve committed to providing for someone who is dipping into a tight student budget to support me, and make this work possible.
Every time I sat down to work on the post, my own feelings of shame, embarrassment, and self-imposed isolation flooded through me.
I remembered, specifically, one afternoon in 2012, standing in a hallway at the U of C, probably the Social Sciences building. One of the little ones, too brightly lit, with old computers on white tables, and plastic chairs, and a few students wandering. Wearing my winter jacket, dragging my backpack on wheels because the fibromyalgia no longer let me carry all those books, on my cell with the campus dental office cancelling an appointment because I was having a panic attack.
That panic attack cost me $100 in a late cancellation fee, and I never rebooked. Now, 5 years later, that memory still sparks shame and anger, and an icy-gut feeling of humiliation over the fact that my panic attacks cost me so much money at a time when I had so little, and that they kept me away from necessary healthcare. (And they have continued to do so! That appointment would have been my first visit to a dentist in years, and when I said I never rebooked, I mean that I never rebooked. It’s on my to-do list for this week. Seriously. I’m gonna do it. For real. I swear.)
The memory is about the money, the shame of “wasting” money on a “ridiculous” mental health issue. Sort of. Maybe. I mean, the money is part of it.
But it’s also about the voice on the other end of the phone, the impatience and irritation of the receptionist, and the feeling of shame when I started to cry and she cut me off. “Sorry, no exceptions to the cancellation fee, if you were going to be unable to make it, you should have called yesterday.”
These feelings are deeply physical. Shame, humiliation, fear – these are all visceral reactions, gut feelings. 5 years after that phone call, I still feel the twisting in my belly as the shame winds through me.
And when Red touches on self-imposed solitude, this twisting shame belly is part of that. Shame, after all, is an isolating emotion. It pushes us away from each other, drags us off into dark corners to hide ourselves.
How do we reach out when we are captives of our shame?
But shame is not the only factor.
Time and energy are also factors.
How do we maintain our social circle when disabilities make the work of school or professional life take longer, and take more out of us?
When fibromyalgia arrived on the scene, stealing my energy and my reading comprehension, and for one horrific semester, my ability to write… everything took longer. Everything took longer. Crossing the street took longer! Reading a paper took longer, and took more out of me. I was tired at the end of a page, exhausted at the end of a chapter. I deferred coursework, missed deadlines, spent endless hours in doctors’ offices and at the disability resource centre – hours that were then not available for schoolwork or paying work or socializing.
The anger at no longer being able to operate as I had was immobilizing, and embarrassing. The shame was overwhelming. The exhaustion was beyond comprehension. It triggered a depression… or did the depression precede the pain? Those years are a dark smear of distress across my memory.
How do you make it through post-secondary or professional contexts when dealing with disabilities or mental health issues?
How do you survive?
How do you continue, knowing that your brain and your body are working against your ability to fit into these contexts?
In 2013, I did my first Year of Self-Care.
I needed it. Even through the blur of my distress, I knew that I needed it. I was falling apart. I was a wreck – physically, emotionally, mentally, financially.
I don’t honestly remember much from the beginning of that project.
I know that I was desperate.
When I was 18, at another desperate point in my life, I had done a Year of Independence in an effort to heal some relationship trauma. It was one of the highlights of my youth, remains one of my favourite experiences. I leaned on that, and set out some plans.
It wasn’t easy.
But one of my founding principles for that year was compassion for myself. The act of compassion and care, even when the feeling was unattainable.
I needed to start there, because at the time, my body and my brain felt like my enemies. I think that’s a common experience for people dealing with disability or neurodivergence. It’s hard to practice effective and sustainable self-care when you feel like your own enemy.
The Year of Self-Care included a lot of hit-and-miss experimentation.
During that year, I discovered how much I enjoy the ritual of tea, and that’s the year I learned to make London Fogs. I still make amazing London Fogs (though not as often as I used to – I need a new milk frother).
I also experimented much more intentionally with using outfits as armour and as a self-affirming tool. Gloom Fairy, The Pirate King, and Elf Commander all have roots in those Year of Self-Care experiments.
How do you continue, knowing that your brain and your body are working against your ability to fit into these contexts?
It was the year that the Wall of Self-Care went up, white boards with anxiety bubbles, and self-care lists, and my inspiration board.
It was the year I learned to swim, in order to challenge a phobia, and get my fibromyalgia pain under control, and prove to myself that I could.
It was the year of endless struggle, and I was lucky because it was also the year of infinite support.
It was a hard year. But it was a good year.
A list of self-care to-do items posted on Facebook in 2013 with the comment: This afternoon took a sudden, unexpectedly intense turn for the worse, so I hung up some stick-on white boards (expanding my wall of self-care) and made a list. Intentional self-care! For those of us whose default position is ‘the unfortunate person crying in the stairwell.’ Sigh.
A badge given to me by my friend Patti when I successfully managed to tread water.
A love note from my little niephling.
The biggest lesson from that year was that self-care is fucking hard. It’s hard. Making a cup of tea when you’re exhausted, and ashamed, and embarrassed, and feeling lonely despite your community – it’s hard. Reaching out for help? Holy shit, that is not easy. Doing anything other than wallowing is just really hard.
Making choices intentionally, and choosing compassion and care, it takes effort. And you fuck up, a lot. You fuck up all the time. It took a year and half to complete my Year of Self-Care (my “Year of Whatever”s are almost always a year and a half – either the new year to my birthday the next year, or my birthday to the new year. I like some wiggle room.)
In that year and a half, I made plans and failed to complete them. I made the same plan again and failed. I made a slightly different plan and failed in a different way. I made a totally new plan and still failed. I tried again and failed. I made schedules and failed to stick to them. I set goals and didn’t meet them. I dropped more balls than I kept in the air, and that’s okay.
It doesn’t feel okay at the time. It feels awful. But that process of failing at self-care is an important part of the journey. Self-care has to involve deep compassion for your broken, aching self. It can’t all be celebrations and successes. It won’t be. If it was, you wouldn’t need it so badly.
In order to get to a place where you have effective and sustainable self-care practices in place, you need to go through the process of pushing against the resistance. The internal resistance, sure. The shame, the fear, the feelings of selfishness and the anxiety over failure. But mostly, mostly, the external resistance.
You have to smash your fist against the cost of self-care. That $100 penalty for a panic attack. The cost of admission to the pool. The cost of white boards. The cost of missed work hours. The cost of healthcare, even here in Canada. The cost of therapy. The cost of nourishing food. These costs that you cannot always afford. You have to run into that wall over and over and over until you find ways under, or through, or around it. And sometimes you don’t. Sometimes you can’t. Self-care cannot belong only to the financially secure. Those of us who are disabled or neurodivergent or otherwise marginalized are much more likely to be dealing with economic insecurity, to be living in poverty, to be stretched too thin, to have ends that not only don’t meet, they don’t even make eye contact. We deserve self-care, too. But it takes time to find those tools, because it’s much quicker and easier when you do have the money for it.
And you have to smash your fist against the unreasonable and inhumane demands of post-secondary and professional institutions. Deadlines and dress codes and disdain. I dropped a course I really loved because handwritten notes were mandatory for a huge percentage of the grade, but my hands hurt too much to write long-hand. More bitterly, I dropped out of the Arts and Sciences Honours Academy because the professor in third year required mandatory attendance, with no more than two exceptions for medical issues. “Breathe deeply and drink a mug of tea” doesn’t wash the salt from those wounds. Getting to sustainable self-care means feeling that sting, doing what you can with the resources that you have, trying to find ways around it. Finding the understanding professors, begging with the disability resource centre, paying the $25 to have a doctor write a letter saying that yes, you really do need these accommodations. It takes time, and it takes energy, and it takes a lot of permission to just be angry and bitter on your way to being calm.
And doctors… another wall, another round of smashing and smashing and smashing until you find the way through. Get the diagnosis, get the prescription, get the help. Or, sometimes, you don’t. Find other ways to cope.
The systems are not built for us.
It hurts to contort ourselves to fit within them.
That pain is real. That injustice is real.
There are ways forward. My Year of Self-Care made a huge difference for me. I’m not meaning to downplay the importance of doing that gritty work of developing more wholehearted self-care and self-storying strategies. But I get frustrated at resources that don’t acknowledge how hard this is, and how much the odds are stacked against anyone who differs from the straight, white, cisgender, able-bodied, neurotypical, class privileged norm.
When I started working on this post, I did what I always do at the beginning of a writing project. I opened a new Chrome window and I googled this shit out of my topic. I started with “self-care for students” and I found dozens of posts. Every post-secondary institution seems to have some kind of self-care guide for students. (Perhaps because post-secondary institutions are set up in such a way that any student who doesn’t have an extremely solid base of socioeconomic stability is pretty much fucked when it comes to mental, emotional, and physical health? Dunno, just a theory.)
These resources place a huge emphasis the individual doing everything possible to maintain their self-care
This resource from the University of Michigan is a perfect example.
“Taking steps to develop a healthier lifestyle can pay enormous dividends by reducing stress and improving your physical health, both of which can improve your mental health as well. Students with mental health disorders are at a higher risk for some unhealthy behaviors. You may find it challenging to make healthy choices and manage your stress effectively while in college. This section of the website will help you find ways to take care of your health, which can help you to feel better and prevent or manage your mental health symptoms.”
Look at that language! You’re at higher risk for unhealthy behaviours. You may find it challenging to make healthy choices. Gross. Gross! There is nothing there about how the structures and systems and expectations and normativity around you are the source of that distress, and put stumbling blocks in front of your movements towards “health.” It pushes the responsibility entirely onto the student who is struggling, and then wipes its hands clean. There’s good advice in that resource, but it comes in bitter packaging.
Even posts like this assume that the identity of “student” is also normatively able-bodied and neurotypical.
“College students’ ability to deny basic needs like sleep can oftentimes seem like a badge of honor proving we are reckless and young. At my school, it can seem like a competition to see who can stay up longer to study, and pulling all-nighters seems like proof we are true UChicago students. One’s talk of working grueling hours in the library is met with solidarity and sympathetic laughter, while taking a break or decreasing course load seems to be associated with weakness.”
College students who can’t meet that expectation are, I guess, not “true students.” When the article concludes that:
“If we want to improve our psychological and emotional health, college students could perhaps benefit from changing their mindsets and relationships to work. Taking breaks and letting our minds rest could be an effective strategy for achieving our goals in the long run, because stress or lack of sleep can hinder productivity. Maybe the next time a friend bemoans having to pull an all-nighter for a class, we can think about how our response may perpetuate a culture that idolizes self-destructive behavior. Perhaps rather than laughing or saying that we understand their struggle, we can gently encourage them to take a break. Or, if it’s you who’s putting in those late-night hours, maybe go home for sleep rather than the campus cafe for coffee. You deserve it. You matter, and your health matters.”
There is still the assumption that this is a choice, and that is not the case for every student.
So, in conclusion, it’s fucking hard. And it’s not your fault. And you can figure it out, but it will take time. And you will continue to run into walls.
Being your own ally is not easy. It’s even harder when there are complicating factors like disability, pain, depression, anxiety, or other chronic issues that aren’t going away. And it’s even harder when you’re in hostile environments like many post-secondary and professional contexts.
But I believe in you. There is a way forward. There is always a way forward.
by Tiffany | Feb 11, 2017 | Coaching, Identity, Narrative shift, Neurodivergence, Personal, Plot twist, Step-parenting
This post was available to my Patreon patrons on Feb 11. If you would like to see posts a week early, visit my Patreon.
This week was challenging. I say that most weeks, though. There’s so much change. I don’t know who I am within these new roles, and everything keeps shifting.
I’m not actually an ocean navigator, despite the wave in my logo. I’m terrified of water (that’s one major reason we picked the wave, and that will be another post). I navigate a metaphorical ocean, but still, I think that the best metaphors are grounded in some reality. And so I sometimes read about the ocean, and how currents work.
There are all kinds of different currents in the ocean.
There are surface currents, driven primarily by wind. Rip currents that happen when a large volume of water funnels through a narrow gap in a sandbar, or between rocks. There are upwellings and downwellings, which happen when the wind blows across the surface of the water and either deep water rises up to fill the displacement, or surface water accumulates if the wind blows it against a shoreline.
And there are deep water currents, too. Like the “global conveyor belt,” a deep-water current that circles the globe and is the foundation of the food chain. It moves more slowly than surface currents, and it takes a thousand years for a section of the belt to complete its journey around the globe.
And there are tidal currents, which switch directions and respond to the gravitational pull of the moon. Flood currents and ebb currents, predictable and cyclical and strong.
Metaphorically, and in reality, these various currents have a significant impact on the whole – whether it is the ocean influencing life across our planet, or the inner ocean influencing the self. The tides, or the deep water ribbons that move slowly and forcefully, or the surface with its rip currents, and its upwellings and downwellings (and the rich metaphor of algae bloom and anaerobic suffocation in the downwelling – the choking off of life when there is no connection to the deeper water – and in the further stretch towards recognizing how downwelling, even though it creates areas of reduced productivity, is necessary for the ecosystem because it allows for deep water ventilation – there are times when lower productivity is necessary for survival).
The sun setting on the ocean.
All photos in the post, unless noted, are copyright-free photographs via Pixabay.
So these metaphors, and these currents, and this difficult, difficult week.
Deep water currents change slowly. Climate scientists are worried about the global conveyor belt because increased rainfall and polar melt will change the salinity of the ocean, and therefore change its density. If the belt changes, everything changes.
And there are changes in my own deep water currents. They change everything.
My work life is changing. I have been aware, for almost a year now, that my steady day job is not guaranteed. The economy, changes in management, the nature of my role. It’s been almost a year of nearly constant low-level stress, with monthly peaking moments of intense anxiety (usually when my student loans come out of my account – lolsob). My day job – boring, predictable, reliable, and one that I am exceptionally good at – has been a constant for me for almost a decade. I’ve been with the same company, in various roles, for ten years. And I’ve been in this particular role for almost six. Seven? I don’t know. A long time. It’s been an anchor. Sometimes weighing me down, but also keeping me stable.
My work life is changing, too, because of this. The coaching and the self-care work, the workshops and resource creation and writing and trying to shape this into a career. The desire to move from work that is reliable and that I am reliably good at but uninspired by, to work that I am passionate about and personally invested in. I will be good at this. I will make a difference. But while I move towards that, there is chaos and uncertainty.
Uncertainty especially in my financial life. I have not been truly financially stable since I was married – my husband made a solid lower middle-class wage, more than enough to allow me to run my dog training business and weather the ups and downs of entrepreneurship, and to buy clothes and food and craft supplies without worrying about it, and to have hobbies and go out for dinners and have adventures. I didn’t worry about money, when I was married. And I have worried about money constantly, since divorcing. It is, like the work stress, a constant low-level hum of anxiety with regular surges to the surface. These tidal currents – the huge gravitational force of capitalism pulling deep fear to the surface.
And that financial anxiety is also tied to my relationships. This deep current originates in my family of origin, in watching the dynamic between my parents when it came to money, and agency, and independence, and reliance. Who earns it, who spends it, who makes choices about it. And then, my divorce and the year after I left, with months of rent on the credit card and groceries paid for by my best friend – a level of vulnerability and insecurity that I had never previously experienced, and one that still trickles icy through my memory, makes me wary of taking risks. And then time spent supporting a partner, who now supports me, and another partner who also supports me. And the vague sense of unease I have every time I require help, ask for a loan to bridge a financial gap, make a choice that may impact someone else.
And now the “someone else” is so complicated by the addition of two little elses. The new relationship of stepparenting. And knowing that my choices now are not just going to impact my financial stability, but also the financial stability of my relationship with my nesting partner, and rippling out from there to affect my stepkids, both neurodivergent, both requiring additional supports. And in addition to the worry about being able to provide materially there is also the worry about being able to provide emotionally and mentally. To heal the old wounds that I still carry so that I don’t pass them on, to adjust to this new role in a way that doesn’t place emotional weight on the kids as I adapt. The shift, such a huge shift, from knowing in a deep and fundamental way that I would never be a parent, to knowing that now I am a parent. And also, the drive to learn enough about the unique needs of these two specific kids, individuals, amazing little humans, to be able to help them, and to help my partner.
And that’s the key, that’s the deep water current that is changing right now – my very sense of self, in multiple areas.
And so then researching. Reading Understanding Stepfamilies: A Practical Guide for Professionals Working with Blended Families (in this, I am both the professional and the family – approaching my life, as I always have, from an academic perspective), reading Family Therapy and the Autism Spectrum: Autism Conversations in Narrative Practice, reading The Whole-Brain Child and The Real Experts: Readings for Parents of Autistic Children. Learning a whole new language, a new area of knowledge. And finding gaps in it – both when it comes to stepparenting and when it comes to parenting neurodivergent kids. Gaps filled frustratingly with the assumption of heterosexuality, monogamy, and cisgender identity, gaps filled with transantagonism, ableism, normativity and social pressure in so many bitter flavours it overwhelms my palate and leaves me gulping for fresh water in the form of writing, reading, trying to find connection and community and incorporate this work into my coaching because if I am falling into this gap, other people must be, too.
And also reading about coaching, about relationships, about narrative therapy – Opening Up by Writing It Down and Retelling the Stories of Our Lives and Levels 1 and 2 of the Gottman Institute ‘Gottman Method Couples Therapy’ and half a dozen other books and courses. And underneath all this research, which I love, is the slow tug of grief at leaving academia, because I decided not to pursue an MA in counselling psychology and instead started on this endeavor and it’s the right choice, and I will make a difference, and I will continue to be an academic and a researcher and a writer (writing a book! And learning how to do that). Independent scholarship is a real thing, and I will do it, but still, the changes.
Some of the books that I’m currently reading.
Photograph by Tiffany Sostar
And this change, this shift away from academics, is huge. Because deciding to finally go to university was a big deal. I had always wanted to. And I had been told, shortly after I graduated high school, that I didn’t have what it takes. I believed that story. That story became part of my core set of beliefs about myself. I was smart, I was a good writer, but I was not persistent. I did not have the “sticktoitiveness” to get through university. So I read academic theory on my own time (this essay – Reading Wonder Woman’s Body: Mythologies of Gender and Nation, by Mitra Emad, was my first academic love), and wrote nerdy papers about feminism and gender on my own time, and didn’t believe I could hack it in post secondary. Until I started dating someone who said “why aren’t you in school? You’re sending me links to feminist theory because you’re reading it for fun – apply to the University of Calgary.” And I trusted him. So I did it. And I graduated with a First Class BA Honours in English and a First Class BA Honours in Women’s Studies. I did it. I challenged that core story and I changed it. And I miss academics. As broken and abusive as that ivory tower is, still, I miss it.
And I miss myself within it.
And that’s the key, that’s the deep water current that is changing right now – my very sense of self, in multiple areas.
Who I am.
Who I am as a labourer – emotional, domestic, social, and other. Where and for whom and how I work, and how I get paid, and where my money goes and where it comes from, and how I spend my time, and my intellectual energy, and what I write and when I write it and who I write it for, and who judges it, and who judges me, and how I define my value and my worth, and where I find myself, and what I call myself, and who sees me and how they see me, and how I see me.
These are the ocean currents of my life, and myself. The deep water currents and the surface currents and the tidal currents. The core self, and the self in relationship, and the self in society.
So, these weeks are challenging. As I move through my life I am aware of the currents shifting, and I don’t know what the ecosystem looks like once they’ve shifted. Who I will be, how I will be, what I will be.
But change is constant, and it is not the enemy.
The Earth has experienced changes before, and I have experienced massive change, too.
I have faith in my ability to survive the chaotic betweentime, and I have faith that I will eventually settle into new patterns and find new wholeness and new peace.
I’m happy with how things are changing. I love coaching. I love this work. I love my kids. I love my partner, and my entire polyamorous pod. I love researching, and I love finding subversive ways to inhabit liminal spaces – bisexual, genderqueer, invisibly disabled, neurodivergent – I was made for the liminal spaces and the betweenings. Independent scholarship feels like an exciting new liminal space to step into. Just like stepparenting feels like an exciting liminal space to explore, with rich potential for writing and researching and offering help and hope to others. Just like parenting while queer, and parenting while non-binary, also feels liminal and rich with betweenness and both/andness.
This is an upwelling – the wind has blown hard across my surface and there is space now for deep water to rise, and bring new life to the surface.
It’s scary, but the ocean always is, for me.
I love it anyway.
by Tiffany | Feb 10, 2017 | Coaching, Identity, Intersectionality, Recap
This post was available early to my Patreon patrons. If you want to read posts right away, check the Patreon!
Earlier this month, I asked my patrons whether they would appreciate recap posts. Most of the feedback I got was that recaps are most beneficial when they don’t come too frequently, and they offer additional insight. There were also requests to archive and make past content searchable, and I’m working on that. Tagging is one option, if I cross-posted everything from facebook onto this blog. Daily blog updates feel excessive in a way that daily facebook posts don’t, so I’m still working on that.
This is my first recap post. It’s a look back at the posts and topics that came up in January, focusing on themes that emerged frequently, and highlighting the organizations, activists, and bloggers whose work was helpful to me in January. I’m not including links to everything posted, just the ones that really stuck.
My first post of the year was one that I’ve come back repeatedly to over the last six weeks. This post from No Prehensilizing, on the topic of quests vs. resolutions, has changed my own approach to resolutions, both in my personal life and as a coach. When I shared it on Jan 1, I said, “If you want to design a quest for yourself, get in touch with me. That’s a thing I can help with! Side quest or central quest, we can set the intention and make the journey.” That’s still true.
I used this approach when I designed my personal quest for this year.
One of the undercurrents this month was permission – especially permission to be struggling and to give time and energy to self-care. It was a difficult month, with a lot of pressure to up our activism and our involvement.
The beginning of January was full of posts about permission – to start something (Jan 3), to stop something (Jan 3), to drop the ball on your resolutions without giving up on yourself (Jan 5), to be present in your body even when you’re feeling shame (Jan 6), to not know whether it’s self-care or self-sabotage and to trust yourself (Jan 10), to take care of yourself when you’re sick or tired or worn down (Jan 12), and, one that really sticks for me, to heal for yourself and only for yourself, even if your pain makes others uncomfortable (Jan 7).
January was a tough month. The inauguration and resulting political actions, and the weight of the season. I posted about handling conflict in relationships when people are under pressure and dealing with exhaustion.
In addition to my own writing, I shared links to a bunch of excellent resources.
First, Lauren Marie Fleming, whose Bawdy Love project is inspiring, and whose work with creative writing has pushed me in new and exciting directions (who has an essay almost ready to submit to the New York Times “Modern Love” column? This writer!).
And I highly recommend that you spend some time with The Body Is Not An Apology. They write about weight/size, disability, sexuality, gender, mental health, race, and aging. They are doing some fantastic work. They have a strong social media presence, and offer a wealth of resources, including online workshops and courses and a thriving and diverse community of writers and educators.
Rest for Resistance is another resource that I linked this month, and highly recommend. Run by QTPoC Mental Health, they offer resources that centre the experiences of, and are written by, queer and trans people of colour. I wrote about and shared this particular post about productivity and worth, because it’s something I struggle with in my own personal and professional life. (When I shared this post from Rest for Resistance, I also made a donation to support their work. It is too easy to take advantage of the emotional labour of people who are constantly asked to do work in order to educate and support others. Women, femmes, and people of colour face an unfair expectation of free labour, and I don’t want to contribute to that abusive cycle. When I can, I donate to support the people who’s work I’m benefiting from.)
Ginelle Testa’s post, 50 Ways to Practice Self-Care When Your Mental Health is Crap, is a great resource for when it’s hard to even get started on self-care.
Madison Mahdia Lynn’s post, A Nervous Wreck’s Disabled Guide to Stepping Up, is fantastic and one that I have come back to repeatedly. Five steps to get from overwhelmed to grounded and ready to step up.
Amani Al-Khatahtbeh is the founder of MuslimGirl.com, and this post (with video) on how to be an ally to Muslim women is relevant and needed right now.
I also wrote a four-part series on the Bell Let’s Talk campaign. Part One, Two, Three, Four. I’m working on combining them into a feature post.
And finally, by far my most popular post this month, was this one from Jan 15 –
This one’s for my chronically ill pals.
You know that story about how you got sick because the universe had a lesson for you?
You know the (usually unspoken) parallel story about how once you learn your lesson, you’ll get better?
You know the secondary parallel story about how if you don’t get better it’s because you haven’t learned your lesson?
And you know how these stories loop back around to another story, that we tell everyone, ill or not, about how if you don’t learn lessons there’s something wrong with you?
That whole anthology of stories is ableist and toxic.
We all have lessons to learn, yes. We’re human, and we grow until we die. That’s what we do.
But you are not being punished for your lack of learning.
There is not something wrong with you if you can’t ace the mythical exam that the universe has theoretically put in front of you in the form of chronic illness.
My fibromyalgia is not a test. (Though it absolutely tests my patience and my ability to be compassionate with myself.)
Your chronic illness, mental or physical, is not a test.
Your cancer is not a test.
You are not being punished, you did not bring this on yourself, you do not have the power to make it go away by being a good enough citizen of the universe.
There are lessons in chronic illness. Powerful, beautiful, annoying lessons. Vulnerability. Rest. Compassion for yourself. The art and artifice of navigating an ableist world while disabled. The self-awareness that comes in when months immobilized on the couch erode your busy-work walls. These are valuable lessons.
But they are not the reason for your illness.
And learning them will not magic the illness away.
And, this is the important part, when you are still sick after learning these lessons, it is *not* because you weren’t a good enough student. That was never your job. That story was a lie.
When you are still sick, it is not because you haven’t learned your lesson well enough.
It is not your fault.
You did not make this happen.