chronic pain

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Hidden disabilities tend to stay hidden (TW!! mental health, issues with healthcare, descriptions of dissociation, family issues, brief mention of fatphobia)

I’ve spent the majority of my life disabled, but no one would ever know it. Except, maybe, if the way I twist and writhe around trying to soothe my pain has been a bother to you. Maybe my dead stares and sudden confusion about what is happening around me have been weird to you. But would these even be clocked as me being someone who is disabled, or just as someone who is a nuisance to those around me?

Read more: Hidden disabilities tend to stay hidden (TW!! mental health, issues with healthcare, descriptions of dissociation, family issues, brief mention of fatphobia)

I had horrible back pain as a kid. Doctors eventually took me seriously and said that I, a 13-year-old, would have to undergo major surgery to correct a 50+ degree curvature of my spine. This is done so with metal rods and screws put into my back. Yes, I can usually feel them.

Did this help the pain though? Absolutely not. The amount of time I have suffered with debilitating chronic pain and all the doctors and specialists I’ve seen have had no success in relieving my pain.

Would people know it? Absolutely not. My parents raised me to shut my mouth and deal with it. To push on no matter how bad it hurt. So I did, and I did, and I did. Dear god, my body is so sad about that.

Years go by, each adding new things. Your insane muscle tension from your surgery is causing you severe migraines? Sorry hun, good luck, and take some Tylenol (that’s hilarious) You’ve had weird severe migraines your whole life too?? We aren’t really gonna look into that at all actually. Your retina is detached, and you need to have surgery to insert a scleral buckle in your eye to reattach it but we also have no clue what caused it so good luck. You’re autoimmune. You have fibromyalgia, you have rheumatoid arthritis. Oh, this medicine isn’t helping your pain??? Wow, that’s weird. Let’s raise your dose (spoiler alert: that won’t help either). It hurts, but it’s invisible. No one knows. But it brings me shame. I hate telling people I have physical limitations, especially as a fat person. People usually give me that once over, like yeah. sureeee. you’re just a lazy bitch. So guess what I do!!! Exactly what my parents raised me to do. Fuck it hurts.

Did I mention these are only the physical ones?

Plethora of mental illnesses I could list on and on, but I’ll focus on the most stigmatized one. I struggle so badly with dissociative identity disorder (DID). Yes. I am ACTUALLY diagnosed. TikTok has absolutely just taken DID and ran with it. So much fake-claiming etc etc etc. I hate telling people I’m a system, I always feel insane and stupid and like I’m lying!! Really though, I can’t make up how terrifying and debilitating it is. I can’t make up how it feels to wake up and realize we are driving and to not have a single clue where we’re going or that we even left the house. I can’t describe how hard it is to deal with the episodes of no escape. I stay trapped, only heavily emotional parts fronting. Scout is causing us to only feel like a vessel. Nothing is real, you’re not real, this is a dream. Max is angry and we need him to not lash out, Ace is hysterically crying, Remy is having insane sensory overload, and Shiloh and Sadie are scared and are having flashbacks, triggering Ace to be hysterical again. Others are desperately trying to help, but get so drained and dissociative. Minutes. Hours. Days. I don’t really ever know how much time passes. I never know who I am. My brain literally feels like it’s buzzing with how much we switch and how much people are opinionated and talking over one another. We have meltdowns picking out clothes, music, makeup, ANYTHING because it is so hard to satisfy everyone and if someone is upset, Max will front and be mean. We don’t want that. Anxiety. Who can front? No one. Everyone is so burnt out. The body is tired. What the fuck do we do?

I keep my mouth shut.

So how do I take care of myself if no one really tends to know the extent of the shit I deal with?

I don’t.

My parents raised me to shut my mouth and deal with it. To push on no matter how bad it hurt. So I did, and I did, and I did.

Dear god, my body, and my mind, is so fucked because of that.

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Am I Faking It?

I have chronic migraines. I got diagnosed when I was probably around 13 or 14, but I’ve never felt like I could call myself disabled or claim identity with the chronic illness/pain communities. It’s not that I feel put off by those labels– I’ve done plenty of introspection on that, to make sure that the reason I didn’t feel comfortable with those labels wasn’t because of some subconscious bias. Rather, I feel like my migraines just aren’t bad enough, don’t affect my life severely enough to “count.” I feel like claiming those labels would be exaggerating, or speaking over someone who “fits” better than I do. 

Which is stupid, by the way. I essentially live my daily life with a near-constant headache clocking in between 1-4 on the pain scale, with occasional spikes to higher levels. When it escalates to a migraine, I get nauseous and can’t eat or drink for a day or more, until it goes away. Before a migraine hits, I often get visual aura, which looks like TV static taking up most of my vision. During a migraine, I become extremely sensitive to sounds and smells, and I get so photosensitive that, especially combined with the visual disturbances, I can become effectively blind for several hours. Depending on weather patterns, stress, and other situational factors, I average between 3-10 true migraine episodes per month, with other severe headaches in between for spice. This has impacted my academics, my work life, my social life, my mental and physical health and development, etc. Everything. Like, what part of that experience doesn’t sound disabling??? And yet, I struggle to feel justified in identifying as such.

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Bedroom.

A view from my bed [ID: Hazy photograph of a window illuminated by vibrant red and purple lighting. In the center there is an electric candelabra sitting on the window sill, slightly obscured by sheer curtains.]

2011 was the year I began distancing. By which I mean, I began a life lived from my twin bed, fueled by goldfish crackers and electrolyte drinks, seldom able to access the outside world. It wasn’t mine to call home anymore.

I was drowning in conditions that these doctors hardly knew about. I had no choice but to become my own doctor, nurse, and historian. More than anything, I became my own community.

The outside world was stolen from me by sickness, uncertainty, and administrative violence – this world was never built for my survival. Such predicaments were met with constant calls to push through – go into the world anyways, risk it all for a “normal” life. They said adapting to it would make me better. It wrecked my body and my mind. Being bedridden was extraordinarily taxing and painful in a way that cannot be understood by those who have not been fully immersed in it in this way, yet. But I am inseparable from my bedroom life, I am made of soft pillows and the world I built among them. 

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The limits of pain; the creation of a unique desire

My back hurts. Every day, all the time. For the last five or so years, I have shifted in my seat every few seconds, taken the elevator to the second floor. I have declined invitations to go hiking or biking, trips I normally would have jumped at the opportunity to participate in. Sitting and standing and lying down are mostly unbearable, which really sucks, because those are pretty much the basic three positions my body can be in.

Sciatic_notches

Ouch.

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