My AS Isn’t Glamorous
I recently posted an update on my Instagram story saying that I was taking a break. I decided to take a break due to my severe fatigue and depression because of it, and I felt like I wasn’t being the advocate that I wanted to be.
That’s when I got a comment from a follower saying that I’m doing exactly what I should be doing. I’m showing that my condition isn’t glamorous.
The mental aspect
A lot of people overlook the mental side effects of a chronic illness, I find. Yes, it’s physically taxing and hard to deal with, but the mental side of things is often worse for me personally.
I deal with anxiety and depression. They’re both related to my illness and not. I was diagnosed with depression and social anxiety before I was sick, but I’d definitely say that my depression has been worse since developing AS. I never had general anxiety before being diagnosed, but I do have it now.
Behind the scenes of my inspirational articles and Instagram posts, yes, I deal with mental health problems. I don’t always listen to the advice that I put out there. Sometimes everything becomes extremely overwhelming and it’s hard to think straight. That’s just the reality of dealing with a chronic illness.
The physical aspect
My worst symptom is fatigue. I can deal with my pain, my fatigue I cannot deal with as well. Lately, I’ve been taking 2 naps just to get through the day. I find myself very lucky to not be working while all of this is going on.
Everything exhausts me. Making breakfast, washing my face, taking a shower. The very thought of yoga makes me want to take a nap. Even after doing something as simple as washing my face, I need to go back to bed and lie down.
I hate it. I hate living my life at 24 years old and being exhausted every single day. Back in the day, I used to work out daily. Now I’m lucky if I get to do yoga once every 2 weeks. I miss yoga a lot, it was the one thing that let me feel like I had control in my life.
Control and pride
Another big aspect of having a chronic illness is the loss of control. We can’t control when we flare. We may have a busy week full of meetings and events, and BOOM, a flare-up happens.
Then we’re stuck. Stuck in bed, stuck in the house, stuck with this pain that just won’t go away. Sometimes we have to rely on others, too. Something that’s extremely hard for me to do. We have to just give up trying to do everything ourselves and let our loved ones help us. We have to give up our pride sometimes.
It’s not always sunny
Having ankylosing spondylitis, or any chronic illness isn’t always a walk in the park. In fact, most days, it’s the absolute opposite. It’s a struggle to deal with when our symptoms aren’t controlled the way we would like them to be.
I’m learning that to be a better advocate, sometimes I have to show that struggle because we all go through it.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?