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I Won't Apologize for My Illness, but I am Sorry for This

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I’m sorry.

I know those two words seem so small, and they are. They are nothing more than seven simple letters, but I don’t know where else to start. So I’ll start with: I’m sorry.

There are things I’m not sorry for, things I can’t be sorry for. I’m not sorry for my illness. The multiple sclerosis (MS) is something beyond my control; it was a life changing diagnosis affecting me physically and mentally. But I am sorry for the time I’ve wasted feeling sorry for myself. I’m sorry for the time I’ve tried to hide my illness, the times I’ve tried to pretend I’m fine when I’m not.

I’ve pushed you away, though you never knew why. You may not have even realized I was doing it, but there were cancelled plans, nights out I failed to attend and social gatherings I forced myself to go to, resentfully and begrudgingly. I was too broken to hold myself together, I was so tired and at times could barely focus because of the pain, but I was also too scared to tell you the truth, so I would just sit there, forcing an awkward smile and some stale conversation about the weather or work.

I focused on little things, like brushing my teeth or taking a shower. It seems strange to even mention these “accomplishments,” but when you don’t want to get out of bed, when you feel those small daily activities will end up flooring you, the simplest of things can be the hardest to do, but also the hardest to admit you struggle with.

I’m sorry for not being present, for not celebrating in your successes and joys. Please know I wanted to, but sometimes the pain held me back — the pain of seeing everything I wanted but would never have, could never have. It’s selfish, I know, but I didn’t know how to handle it.

I’m sorry for the times my temper has been short and you’ve been the recipient of my rage. Anger has been the most unexpected symptom of my sickness. I have always been so placid, but I think the fact that my symptoms are not always understood or sometimes made out to be trivial annoys/upsets me. It’s the anger that scares me.

And I’m sorry.

It’s embarrassing and scary to admit you need help, to admit you are not OK. You’ll have to talk to friends and family about your illness, even when you don’t want to. You know you can’t close the curtains and hide anymore, and that thought is terrifying.

I know I’m lucky in some aspects since I can still walk (albeit not as much as I could), I can still work, I’ve had the best treatment available… but that doesn’t stop me still mourning who I used to be and bursting into tears at times if I get leg spasms or the pain is too much. The frustration is immense, and I don’t enjoy the amount I end up sleeping. The fatigue is constant — I’m not lazy. The days my legs are crap are frustrating and upsetting at the same time, and I seem to cry whether I’m upset or angry (also annoyed). If I feel my leg about to buckle or pain in my hip, I hate that I then have to find a seat and slow everyone down. I hate that I “ruin” days out due to not being able to walk far enough or having to stop early. I hate feeling like a burden so I have to try and hide it. I have to push through.

So to everyone who has gone through this with me, who has had to put up with me on my worst days, I am sorry — but I am also thankful to you.

Getty image via Marjan_Apostolovic

Originally published: March 8, 2019
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