Having AS and Always Fighting for Yourself
I'm writing this article to air a frustration I have with something a lot of us with AS have to deal with. I feel like I’m constantly fighting for myself. Whether it be because of my fatigue, my pain, or my inability to do a lot of the things other people can, I always find that I'm fighting for my illness.
Fatigue. The thing I'm pretty sure I'll never truly get rid of. It's the symptom that plagues both me and a lot of us with AS the most. Not only do we have to deal with being extremely tired 98% of the time, but we also have to deal with the guilt of it and the fact that we have to explain ourselves to just about everyone in our lives.
I constantly find myself having to explain how much having a chronic illness (being in pain ALL THE TIME) affects the body. No, I can't work right now, because doing something as simple as the dishes can send me to bed early. How am I supposed to hold up a job with that?
I feel like unless you have a chronic illness, you shouldn't be making any assumptions or suggestions as to how those of us with chronic illnesses should be leading our lives. You do you, and I'll do me.
For a lot of people, the idea of being in pain 24/7 is a scary thought. For people with chronic illnesses, that's a scary reality. I tend to give people the benefit of the doubt on this one because unless you're the one going through it, or someone close to you is, it's hard to truly grasp that idea.
Though just because you don't understand it, that doesn't mean that it can't be true. I feel like a lot of us with AS are constantly fighting for others to just understand us. When we're laughing, we're still in pain. When we're not complaining, we're still in pain. At a BBQ? Still in pain. Doing the dishes? Pain. Get it?
Just try listening
I get very easily frustrated trying to explain myself to those who don't get it. I'm just always in pain. I'm almost always exhausted. Some days are better than others, but it's always one day at a time. I have a big range of symptoms, and with those, always a scale of 1 to 10 on how I feel.
Being open to other peoples' experiences creates a better atmosphere for everyone. Once we can learn and understand different walks of life, that opens up a whole new world of relationships. So if it's hard for you to understand what someone with chronic pain/illness goes through, just try asking questions and listening. Most of the time, I'm glad to explain what I go through on a day to day basis.
The only way for AS to be known and understood is to talk about it. Normalize it. And don't ever apologize for what you go through, because you didn't choose it.
Do you use the word disability to describe your AS?