Spondyloarthritis Awareness Month: The Frustrations of Living With Ankylosing Spondylitis
Living with ankylosing spondylitis is frustrating. It's not "JUST back pain" like many of us hear from time to time. As if the fatigue from AS isn't tiring enough, it's draining when we have to constantly explaining why we are canceling plans or taking a rest day.
During Spondyloarthritis Awareness Month this May, we asked the community to vent and let out some of these frustrations so that others can see that they're not alone.
Receiving a diagnosis of ankylosing spondylitis
In our 2019 Ankylosing Spondylitis In America Survey, 94% of respondents reported seeing more than one doctor, and 14% reported seeing 10 or more doctors before being diagnosed. Many people have been told by one doctor they have AS and then told by another they don't. Now that's frustrating.
How frustrating was your diagnosis experience?
Social life with ankylosing spondylitis
On top of pain, the impact of ankylosing spondylitis on a person's family relationships, friendships, and sexual relationships can seriously affect their quality of life. That's why it is so important for us to connect with each other and find communities like this where people truly understand our frustrations.
Check out how our advocates deal with AS and social life:
- Why We Need Community by Jed Finely
- I’m the Girl Who Always Cancels by Steff Di Pardo
- Partying in Pain: Going Out as a Young Person with AS by Cassia Pelton
Has AS affected your social life?
The most frustrating part of living with AS
A lot of the frustration of living with AS comes from a place of being misunderstood and from the unknowns of each passing day. Our Facebook community had a lot to say about it:
Lack of understanding
"The most frustrating part of living with AS is lack of understanding, I can’t just get over it! Eat better, or take a nap! Don’t you think I have already tried...I am fighting a war that I can not see, because it is deep inside every part of my being😢" -AS Community Member
"Uncertainty! Will I be okay if I play music and dance a little? Will I be okay if I garden a little bit? Will I be okay with that pop in my back? Is my hip just achy? If I look up at a bird, will I fall down from dizziness? If I carry a glass, will I drop it or should I stick with plastic? Etc., etc., etc." -AS Community Member
"I'm amazed at how many know exactly what I think and feel constantly. I've had people tell me that I don't look sick so I must not have anything that's very seriously wrong. Nobody can see it so it must not be there in their minds, but my body is becoming totally debilitated from this horrible disease." -AS Community Member
Read more responses to this #FRUSTRATIONFRIDAY post in our Facebook group.
We're in this together
Through every frustration, uncertainty, and misunderstanding, we are here for each other. Share your frustrations about living with AS or offer your support to someone in need in the comments below!
Do you use the word disability to describe your AS?