• AJ Hawkins

My Illness Isn't Instagrammable

Updated: Aug 6

Social media has been a game-changer for the chronic illness, mental illness and disability communities. People with conditions that were once isolating, can now connect, offer support and swap tips for coping. The spoonie community, born out of the Christine Miserandino’s “Spoon Theory”, is millions strong, uniting people across the world and spectrum of diagnoses.


Note: While I recognize that not everyone in these groups may identify as spoonies, for simplicity’s sake I will use “spoonie” in this piece as an umbrella term for anyone who lives a life with extra encumbrance due to a physiological abnormality.


When I first went through my process of getting diagnosed with Ehlers-Danlos, about 5 years ago, it was social media that helped me through it. The wealth of advice and support I received floored me - how to get training in a new career, where to find specialists, what type of braces to wear so I’d stop dislocating my wrists in my sleep, and validation that having your body suddenly fail you at 22 really did suck and it was okay to be sad. I got on board with the lingo; I learned the hashtags. As I began to honor the new boundaries of my body, I learned the discrimination that is unique to invisible illnesses. As I was pushed more and more out of my communities that centered around activities I could no longer participate in, I replaced them with online communities of people who knew just how I felt.


Wearing Ring Splits to Help Manage Hyperextension and Inflammation in My Hands

When my art business started to grow, and then KALMA was born, I set out to honor these communities by using my platform for advocacy. It seemed natural and easy; I didn’t mind sharing about my experience of illness. It was a natural extension of my work on death and grief, exploring fear and loss and the limits of the body. I wanted to be a resource, a support, a friend, like the ones that helped me.


In February of 2019, one month after launching KALMA, I began the process of withdrawing from a prescription steroid medication which had started causing serious side effects. I knew that staying on the medication wasn’t an option - I was already ill, and worsening at an unsustainable rate - but I wasn’t fully prepared for the lazy river tour through Hell that I had embarked on.


There are two basic components to my withdrawal experience: recovery from HPA-axis suppression, and the onset of and recovery from erythroderma. The HPA-axis governs your body’s production of cortisol, and my body no longer produced enough. Cortisol plays a huge part in regulating your body temperature, blood sugar, metabolism, hormones, immune system, histamine, memory formation, inflammation, and sleep. Erythroderma is a process in which the skin becomes bright red, swollen and inflamed, and sheds excessively. And I mean, excessively - at its worst, I was shedding and sweeping up two cups of skin a day.

My entire body was an open wound; it bled and wept and smelled of death. The damage to my skin made my hair fall out - first my arms, then my head, then my eyebrows. My skin would so fragile it would tear open, so I stop laughing and smiling. I no longer recognized myself; I stopped looking in the mirror because it was too hard. I only left the house on “good days” - sometimes weeks apart - and still, never managed an errand without a comment or look from a stranger. For the first time, I learned not only the discrimination that comes from having a visible illness, but the ostracization that comes from having a *gross* illness.


I stopped taking "progress" pictures of myself after the first month - it was too disheartening. I only posted old photos of myself online, until I stopped posting my face altogether. I stopped showing my hands making art in videos. I stopped talking about my illness online unless I was apologizing for missing another deadline. I wondered why I was hiding from the community that had the best chance of understanding; it took me a little while to realize that the spoonie community has a diversity problem, and no matter how I dressed it up - my illness just wasn’t instagrammable.


When you look up hashtags like #spoonie #spoonielife, #chronicillness, #chronicallyill or #disability these are the images you see. Smiling white faces, plates of healthy foods, someone working out, someone wearing a sassy t-shirt with a questionable font choice. Articles with titles like, “10 Chronic Illness Accounts You Should Follow”, show similarly aspirational snapshots of fruitarian influencers, bodybuilders, thin people doing yoga, someone with the word “depression” sharpied on their skin in block letters, and maybe a token person with an ostomy bag or mobility aid. #ButYouDontLookSick is the great double-edged sword of the spoonie community - at once validating that illness can be invisible, and reinforcing the idea that illness should be invisible.



I’m not here to shame ill and disabled people for celebrating having careers or families or a “good day”, or eating healthy, or exercising if/when their bodies allow it. My point is that these pictures aren’t *the whole picture*. These aren’t images of illness or disability - they’re images of people. When we only wave our spoonie flags while celebrating able-bodied achievements, we create unrealistic expectations of what it means, and costs, to be ill. In the 2000s, we started to understand and talk about the damage that the heroin-chic model standards of the 90s wreaked on the collective psyche - representation matters. Spoonies are already othered in, and sometimes barred from, the outside world. If we can’t feel welcomed and represented among our own communities online, where are we supposed to go? And if we aren’t the ones to improve representation within our own communities, then who will?

The First Time I Felt Beautiful Since I Got Sick

At the same time, illness and disability can be traumatic. It’s understandable not wanting to, or being ready to share that trauma. We still need to be kind to ourselves and prioritize our wellness above all. I have struggled with depression and depersonalization. My self-esteem has been terrible, and I have needed time to process, and grieve. Two weeks ago, I looked in the mirror and saw myself for the first time in over a year. I’ve been in withdrawal for 16 months now, and I feel ready to stop hiding.


The images in this post only show the least severe manifestations of my illness, but they’re a step toward honesty, and a step toward a more-whole picture. Going forward, I’m going to challenge myself with being more comfortable being visibly ill both in public and online, and I’m going to be more transparent about my use of photo editing to hide my symptoms.


We need to normalize and accept images of the whole spoonie experience: large bodies, brown bodies, uniquely shaped bodies, bodies with mechanical parts, bodies with hair that’s dreading itself because we’re literally too exhausted to wash it, bodies in the small islands we carve out in our beds in a room overtaken by a depressive episode, bodies with psoriasis in bikinis, bodies having anxiety attacks at the doctor’s office, bodies without makeup, bodies unfiltered.


We need to normalize living with illness, instead of in spite of it.


My Unfiltered Hand, With Skin That Still Doesn't Quite Look Like Mine