My Illness Won’t Get The Best Of Me – Or Will It?

image is of a young looking white female presenting person. she is wearing a navy tank top, and a sparkly navy, medium blue, teal, and purple tutu. she is also wearing purple and green butterfly wings, and has on a pink and purple floral crown. i have no idea how you would describe my position - I leapt back because i forgot to hit the self timer so i was caught in action. almost flailing.

image is of a young looking white female presenting person. she is wearing a navy tank top, and a sparkly navy, medium blue, teal, and purple tutu. she is also wearing purple and green butterfly wings, and has on a pink and purple floral crown. i have no idea how you would describe my position – I leapt back because i forgot to hit the self timer so i was caught in action. almost flailing.

My illness will not get the best of me. Some days, it will beat me down. Some days, it will make it impossible to move. Some days, it will make me so sick I have to choose washing the dishes or taking a shower. As I fight along side whatever is making me chronically ill, it’s not going to get the best of me.

To say “the only disability in life is a bad idea” is absolute bullshit. Smiling at the lines of bottles of medications won’t make me need them anymore. Watching all the comedies I want and laughing until I cry won’t make me not be in pain anymore. And so, to say it won’t get the best of me is also kind of bullshit is a similar, although different, vein.

I often see people say “I’m not disabled, I’m differently-abled.” That’s a very problematic term, which you can read about here. I also choose to use identity first vs person first language, which you can read more about here. But here’s the thing: I am disabled. It’s as much of a pair of who I am as my hair being brunette or my skin being white. And to me, by saying things like this you are brushing off the struggles that disabled people face. The micro and macro aggressions we walk (or roll, or hobble) into every single day. It’s complicated and layered, but it has a lot to do with the whole sentiment of “just cheer up, buttercup, and your disability will go away”.

The thing is, my illness does get the best of me some days. Many days. Most days.  But it doesn’t mean that I cannot make the best out of what I’ve been given. I can still dress up in halloween costumes, like pictured. Too bad I’m not a pain med therapy. 😉

There are days when my illness sends me to the emergency room or gets me admitted to the hospital. There are days when my doctors throw their hands in the air and tell me, to my face, they don’t know what’s wrong with me. Why I’m losing weight. Why I’m puking. Why even heavy duty nausea meds don’t always cover it. Why I am so much pain day in and day out. As one of my doctors said recently “It’s 3 steps forward, and 2.5 back.”

Yes, my illness does get the best of me. It gets the worst of me, as well. It gets all parts of me. To say I won’t let it beat me is silly, because I’m not really beating myself. I am happy with who I am. I have accepted that being a disabled person (see? identity first) is a big part of who I am and what my life is like and you know what? That’s perfectly okay.

One thought on “My Illness Won’t Get The Best Of Me – Or Will It?

  1. This is SUCH a great post. I hate the “I won’t let my illness get me down!” mentality, because sometimes it just kind of does. That’s part of being ill since birth, and for the rest of my life. I’m even an optimist, but….ignoring the bad things in your life doesn’t make you an optimist. Looking forward to my good days and low-symptom times, and planning for the future makes me a chronic illness optimist. I hope this comment makes sense, I just have a lot of feelings about this!

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