Illness means you’re ill, not dead

I’m gonna be honest, today was really shit. Mentally, physically, everything. And a lot of this was created by me. I could have avoided it. But I didn’t. Here’s why.

A couple days ago I was browsing the Ankylosing Spondylitis subreddit. There was a post from a woman about her boyfriend who has AS. She says – he sabotages himself. He doesn’t do the right diet and the right exercise, and she gets very frustrated with him because he doesn’t seem to want to help himself.

I can understand how she feels. It’s extremely hard watching someone you love hurt themselves, either actively or passive. Any partner I may have will also have to deal with my illness, and it’s no cake walk. A lot of allowances have to be made, a lot of limits apply.

This was my reply on reddit:

I have AS, I’m 28. I can sympathise with both positions. I am well aware of the need to control my diet and exercise, and the impact it will have if I don’t. But these things are way easier said than done. You can’t force him into it and I’d get angry too if any partner I had tried to make those decisions for me. I do the best I can but I can’t be perfect all the time. It’s extremely hard to stick to a very controlled diet, and even harder to exercise when you’re so sore and tired all the time. If you can, you just need to continue supporting him. It’s just a guess, but if you try to force him into things he’s not ready for, it won’t do your relationship any favours. Like someone else said, maybe look at joining a pool together? I have found that by far the best exercise. And maybe make him meals you know are good? I am so grateful when others do this for me, so so grateful, because I get so tired and cooking is hard. I hope some of this helps.

Why did today suck? Because I had four hours sleep, which I could have not done, but I was having fun, and so I stayed up until 4am. Because I drank three cups of coffee and caffeine is bullshit for my body. Because I chose not to eat. Because I walked all over town, pushing through my pain and fatigue, to do a bunch of errands that definitely could have waited for another day. Because I spent more money than I actually have on doctor’s bills and Christmas presents and money stresses me the fuck out. And because I smoked to try and cope with having a meltdown in public.

I could have not done all of this. I could have gone to bed early, had one cup of coffee, eaten proper meals, left some errands for another day. Stopped smoking.

But you know what? Just because I have a disability, just because this fucking illness I never asked for has decided to come along and try to control basically my every fucking move – that doesn’t mean I’m going to give up on trying to have a normal life. No, more than that, to live my life the way I want it. To be able to do everything I want and need to do.

And maybe that’s stupid. Maybe it’s selfish to keep pushing my limits and maybe I just need to grow up and accept the fact that I’m not that girl anymore. I can’t run on four hours sleep and five shots of coffee and an empty stomach and smoke. Probably no one can, or should. I’m only going to pay for it when I try.

I think there has to be a middle ground. I know I should do better. I know I need to get back into swimming and yoga. I know I need to eat better. But if anyone tried to force that on me? I’d probably lose my shit. Even if they were coming from a place of love. It’s my body, and it’s my choice.

And yeah, I shouldn’t be smoking. Smoking kills you blah blah. Well, I’m already dying, probably a lot faster than most people I know, so excuse me if I have a couple vices I’m not willing to give up.

I don’t think the person who asked “how can I get my boyfriend to ____?” understands what it’s like having a degenerative illness. I have an ex who used to say to me, “Sarah, we’re here for a good time, not a long time.” It’s true I may live til I’m old, but AS isn’t going to make that easy. And when you are suffering, both mentally and physically, I really cannot express how difficult it is to gather the spoons for a trip to the pool. Or the willpower required to not just eat some fucking chocolate. It is beyond what I could ever have imagined. Many days, it’s just beyond what I’m capable of.

I do the best I can. Some days, I do better, some days I don’t.

But I’ll be damned if I let this illness rob me of everything because of it.


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