Why I Feel Guilty for Being Sick
For many reasons, and I’m sure a lot of you relate, I feel quite a bit of guilt for being sick. I know that I shouldn’t, but it’s always there. When I’m in bed for a day, when I just can’t do what everyone else can do, and when I can’t go out with friends because I’m just in too much pain. These are things that make me feel guilty. That’s just to name a few.
Spending a day in bed
Since I spent so much time at the beginning of my illness being in bed all day, I absolutely HATE staying in bed for a day. Did I use to love it, watching YouTube and playing app games all day? The dream! But since I was bedridden, literally unable to move from my room, it gives me a great amount of guilt just being in there past noon. I know that somedays, realistically I should stay in bed, but I just can’t. Even if my body needs that rest, I can’t do it. I need to get up and (somewhat) moving in order to feel like I’m not wasting my day away. That is absolutely not to say that if you need that bed day, you’re wasting your day. This is just how I personally feel about it. Get that bed day if you need it!
Trying to be "normal"
If I do manage to go out with friends, I’m at that age where basically anything that involves fun also involves drinking alcohol. Alcohol is an issue I’m still dealing with, as it’s begun to make me feel extremely nauseous whenever I have even one glass. I’ve never been a big drinker, but a glass or two at a social event usually helped me ease up a bit. Now, having a glass basically ruins my night and I’m nauseous for the rest of it.
It’s hard to see everyone around you having a good time, while you yourself have to fight back that feeling in your stomach and fake having a good time until it's acceptable to go home. Trust me, I know that having alcohol does not equal fun, but it’s still hard when everyone else gets to enjoy their night a little bit more. This is especially hard because I deal with social anxiety as well, and that one or two drinks can make a big difference.
Living as a young adult with AS
A big thing that I feel a lot of guilt around is trying to be a normal 23-year-old. Getting diagnosed with AS at 21, I feel like I had to do a lot of things that other young adults didn't have to. Learning how to take care of my body when it's in so much pain, and being able to take care of myself, let alone try and support myself, is extremely hard to do when you see everyone around you going to parties and doing the activities you can no longer do. I feel guilty for having to stay home most nights and just take it easy.
Handling friendships with flares
Flares make everyone’s lives just a little worse. I think we can all agree on that. I can’t even tell you how many times I’ve had to cancel on plans from either being in too much pain or just too dang tired. After a while, you start not getting invited places, but that’s a topic for another article. I always feel a tremendous amount of guilt for having to cancel on plans. And of course, it’s always last minute, because you never know how you’re going to feel that day. That only makes it worse. Being known as the person that always cancels plans last minute is not the person that I wanted to be known as, but such is life. If you have good friends, they’ll understand, and that’s really all that matters.
Realizing what we can and can't control
I think there will always be a small amount of guilt there for being sick, but I think it’s important for us to realize that we have no control over what is happening to us. This is how our paths have gone, and we have to adjust. That’s just life, and it’s all about adapting. We can learn how to deal with our guilt together, and that’s what’s important. That we have a strong community and lots of support behind us.
Do you use the word disability to describe your AS?