In the words of Tenille Townes:
Oh, I don’t know the reasons whyVerse from song Somebody’s Daughter
I’m the one who’s driving by
And she’s the one on the corner of 18th Street
We all exist at the mercy of something. Perhaps the larger world around us, and as much as we speculate and find news ways to study and better understand, what we remain at the mercy of is a mystery.
Within the chronic illness and disability communities, we often find ourselves straddling the mercy of expectations from society around us, our own expectations, and the expectations formed within this community.
Each one of us has our own experience. What limits us varies depending on our demographics and our conditions.
Perhaps this post derives a bit from an existing conversation within the community about the social and medical models of disability. But perhaps it’s more a look into how ableism and judgment are pushed within our community and how these experiences can be alienating.
To touch on the social and medical model that juxtaposes the idea that disability is either a societal limitation or a bodily one, I think for the broader purposes most of us find that disability and our relation to how we function in the world relies on both models at varying levels. I for instance, need society to change the way production and contribution to capitalism determines worth and value. I am still valuable to the communities I am apart of without working in the standard sense. But, I also need medicine and scientific advances to best manage my own pain and symptoms to comfortably exist in the world.
When we leave the realm of outside perspectives and limit our lens to other disabled and sick people, this is where I feel the most alienated. I’ve long let go of what the outside world expects of me.
Disability is broad. I touched on this on twitter as it relates to working and accommodations and how we don’t fit into perfect little boxes.
But in this discussion, I got placed into a box I wasn’t very fond of.
I had a lot of people correcting me and speaking over me with the “as an actual disabled person” messaging. This is harmful, because numerous disabled people saw a young white woman discussing how disability doesn’t fit in boxes, and decided they were the authority on the topic and I was merely a commentator. The phrasing used implies they are quoting someone who is not a disabled person.
This is where ableism in our own community has a negative impact and the root of why I struggle with fully connecting to spaces for disabled people. Disability includes physical disabilities, invisible disabilities, mental disabilities, and chronic illnesses which bridge and weave through the previous categories. A lot of people are loud and wrong in policing people who don’t look sick and limiting their scope to those with visible physical disabilities.
I’m not the right kind of sick to be in the disabled community.
The place I most identify with, is with other people living with chronic illnesses – disabled or not. I find this to be a space where pain and symptoms are discussed as primary barriers which I relate to more than say infrastructure access barriers.
Except, the othering that occurs here is more subtle but equally as alienating.
Some of it is on me. I’m aware that feelings rooted in Impostor Syndrome cause me to interpret things differently.
For instance, conversations around fatigue and what a large portion of people simply don’t do due to energy limitations alienate me.
So many people discuss changes in how they manage (or are unable to manage) personal hygiene routines, how they go weeks without washing their hair, or have a complicated relationship with their toothbrush. Some days it’s the concept of never having a clean house.
I don’t relate. I strive to keep things tidy. My cleanliness routines are not disrupted by migraine.
The reality is, I don’t have fatigue, or at least the fatigue I do have isn’t severe. Therefore, the conversations don’t apply to me and it’s me trying to fit into a box that wasn’t built for me. I get that. Still doesn’t change what my brain tells me.
I’m looking for a place to fit in, and when the main conversations revolve around experiences that are contrary to mine, I’m left feeling as if because my energy isn’t regulated in this specific way my experience must not be as bad.
Perhaps if a few people chirped in by adding that they can Do The Thing but only for 2 hours if they want a chance at being able to cook dinner, I’d feel more seen.
Often these internal judgments are based on the expectations I have for myself for what it looks like to have a chronic condition. It’s okay that I don’t meet those expectations.
What isn’t okay is perhaps a bit harder to talk about.
A lot, and I mean A LOT of sick folk spend their time placing their own expectations on one another and actively working to other them. We shouldn’t need to police our own communities when the outside world has that covered.
In a community where we are so understanding of what it means to be sick and how this shapes our experiences, we still lack compassion towards others and the ability to separate our own experience from there’s.
Being young and chronically ill is a battle on its own. You’re excluded from conversations that talk about diagnosis as an adult, are talked down to by people who think their age means their experience with the same condition is more informed, and have little representation and support for where you are in your life. And that’s a conversation for another time.
There’s also a lot of judgement and resentment when it comes to diagnosis, and I believe age plays a part in it as well.
Two weeks ago after sharing my diagnosis of psoriatic arthritis and the decade long history documenting how the condition had likely been there all along, I was bombarded with people angry at me for receiving the diagnosis with such ease.
I don’t really think that a dozen doctor’s giving up on me and solving various injuries because they couldn’t find the cause, and therefore couldn’t find something to treat is ease. I don’t think allowing a condition to exist under the radar, missed time after time, until a serious flare occurs is ease.
I got a diagnosis because my hand up and stopped working. If that hadn’t happened, I wouldn’t have a diagnosis today.
Instead of feeling relieved to finally not be undiagnosed I was condemned by members of my own community, who don’t know me, for shifting into the diagnosed category.
It’s as if they saw a young person receive a diagnosis and no amount of “hey I’ve actually been dealing with this for years trying to find answers” could sway them away from resentment.
And I see things like this all the time. People actively trying to invalidate someone else’s experience because it doesn’t fit their own. And I’ll let you in on a secret I learned from my own feelings around fatigue, the best thing you can do is simply shut up and leave your comments to yourself.
What stands out the most is that these invalidating remarks are often subtle. They are tied up with hints of positivity, but leave a bad taste in your mouth like a backhanded compliment. They are left with the intention to question the legitimacy of your experience, question your place in the community, and used to make you feel bad for having success.
I understand why you may be resentful at the system for misdiagnoses. For downplaying your pain and symptoms. For refusing to treat you or offer tests. For costing so goddamn much. But I don’t understand why you’re angry at a patient who did get a diagnosis.
Because now I’m left on the outskirts of the chronic illness community as well. You worked to other me, and you did a good job.
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