I’m so angry and I can’t just sit here and internalise it any more. We’ve published a lot of articles on mental health over the years, because although the stigma is starting to shed there are still huge amounts of bias and discrimination against people with mental health difficulties in this country. I’ve written about it in the past, but I’m not going to write about that today. There is something else lurking under the surface that people don’t know or care about.
Invisible, or hidden, disabilities are defined as disabilities that are not immediately apparent. Despite campaigns, invisible disabilities are still treated as insignificant by most. Well you know what? I have an invisible disability, and I’m REALLY tired of being invisible. Let’s talk about it!
Some background; my disability is a bone condition that means some of my bones keep growing, causing damage to the surrounding nerves and structures. It results in deformity, chronic pain and is primarily managed by recurring surgeries to remove bony overgrowth. It is not all over my skeleton, preferring instead to wrap itself around my skull and facial bones. It is rare; in fact I am the only person I know with this specific condition.
To many, it is not immediately obvious that there is anything significantly wrong with me; I’m outgoing, loud, funny. I don’t look like a disabled stereotype. Maybe it would be better if I was obviously impaired? I don’t have to look disabled to feel it.
I am twenty four years old and my body hates itself so much it’s rotting from the inside out. That’s what it feels like. I’ve never seen my true self, because my entire face has this horrible painful benign tumour on it. In a world where symmetry is the standard of beauty, do you know how awful it feels to look in the mirror and see how off kilter you look? I can’t even talk about it anymore, because I’m told that “no one else notices it” and I’m overreacting. I’m blind in one eye, not two. I can see what I look like. I don’t think I look that bad!
Honestly, it’s not even the asymmetry that kills me. The worst part is being reminded, every time I look at my own “face” of the surgeries that have happened. Waking up in intensive care. The pain, the nausea, the sickness. Every time I look at myself, there is a part of my brain chiming in that there are more surgeries yet to come.
Do you know how bloody awful that feels?
It probably wouldn’t be so bad if I knew someone else with a similar condition that could relate. I have friends with a variety of disabilities, but each disability affects people in a slightly different way so telling me to talk about my condition with someone experiencing something entirely different isn’t helpful. A friend went to a chronic pain conference recently and told me how liberating it was to talk openly about coping strategies, pain killers and generally how shit it is to always be in pain. Normally, if you talk to someone healthy about how many pain meds you take, they usually look at you like you’re an addict, or smile politely because you’re a cripple and they want to be seen to be supportive. I’m no longer allowed to work, but when I tell people I’m on disability benefits they mutter nasty things under their breath (yes, even some of my ‘friends’). I just want someone who gets it. Someone to swap war stories with. Someone who reads about our shared condition so we can swap information. Don’t misunderstand, I wouldn’t wish my condition on anyone…but I would really love to meet someone else like me.
I wasn’t always like this, you know. I used to fly through life; even after my first surgery, I sat on multiple society committees, got involved in student life, went to college (sometimes) and worked 20 hours a week… but if I’m being honest, I also had chronic migraines that used to leave me bedridden. I used to lie in bed and cry because I didn’t know how to “get over it” like everyone told me to. I overcompensated. Hard. Now years of surgeries and driving myself into the ground, desperately trying to convince myself and everyone else that I was totally healthy have left their mark. When I look back and think of what I used to be capable of, it physically hurts to think of how I function now, by comparison.
I shouldn’t compare the two; it’s apples and oranges, I know that. It’s part of the dissonance between how I see myself and how I really am. In my head, I am a healthy 24 year old, for the most part. Even on the days I admit that something might be wrong, I don’t see the disease as part of me. It’s something that is stuck to me, something to be removed. The idea that I am chronically ill and that there’s no cure? I know that. I acknowledge it – but I cannot accept it.
I think that’s why it hurts so much when people tell me to get over it. Don’t you think I would if I could? My god, my life would be so much easier if I could just accept my limitations and get on with it, but I can’t, and I will never accept this. I can’t believe that this is my lot in life. Chronic fatigue and pain with no end in sight? I don’t know how to move past that. I don’t think I ever will.
When I was first diagnosed I was told it was a once off surgery. Unfortunately, I became ill again. When I had the next surgeries, we found out that the bone will likely never stop growing, and I’ll need recurring surgeries throughout my lifetime to keep my condition in check. At every turn we find out that my case is a bit more complicated than we thought. Every time, the prognosis seems to get a little bit worse, and it’s so hard to stay positive and upbeat when every check-up or surgery ends with either of these two phrases: “no improvement, come back in a year” or “we need to talk…”
If this article sounds bitter, well, it’s because I am. Normally I’m quite capable of coping with my disability. I try to be active in the community, I participate in the occasional extracurricular activities, I work as hard as I can at college. I do my best. On days like today, however, I have to admit that my current best doesn’t feel like a patch on my previous best. I have to confront the fact that I may never be that well again. I know what you’re thinking, but I’m not depressed; I’m grieving for the life I thought I would have, a life that died when the doctor told me I have a condition that cannot be cured, only managed.
I don’t want your pity. I don’t want your condescension. I just want people to understand that I can’t always do the things I used to anymore. When I say no to meeting up with you, it isn’t because I don’t value your friendship, it’s because I get tired so much faster than I used to. When I don’t drink, it’s not because I’m a ‘dryballs’, it’s because I’m on whatever meds the doctor thinks will help this time, or because it wears me out. I don’t need a pep talk. I don’t need to be told how great I am, like a small child. If you tell me that “everything happens for a reason” or that I just need to “get over it”, you are genuinely dead to me. I may be a broken person, but I’m still a person, so treat me like one.