My Symptoms May Be Invisible, But I am Not
A lot of my symptoms are very much invisible. When I was first diagnosed, I felt like I was invisible. Within the past year and a half, I’ve made it my goal to be both seen and heard by anyone with eyes and ears.
When my symptoms first started back in February 2017, I had to leave my job and spend all of my time in bed. I could feel myself disappearing into the background of everyone’s lives both voluntarily and involuntarily.
I’m sure you know when something major happens and suddenly you’re unable to move because you’re in so much pain, you don’t really feel like talking to many people. At least I sure didn’t.
I quickly stopped responding to texts and calls from my friends. There was too much going on for me to even try to explain. I had no idea what I was going through! And the fact that everyone had last seen me up and mobile, and now I was the opposite, was hard for me to them to understand.
I would get messages every so often asking when I was coming back to work, and I truly had no idea! No one knew what was wrong with me, and I was in constant agonizing pain. I started to give short answers because I just didn’t want to deal with the questions anymore.
Over a few months, I became perfectly fine with not speaking to anyone and just learned to deal with the pain and the emotions on my own.
Once I finally had an answer for the pain I was in for a year, and I got over the initial depression of learning that I had a chronic illness, I began speaking about it.
I started a website, I started posting here and there on my Instagram about the pain I was in, and the symptoms I had been experiencing. That’s when I started to find an online community of people with AS and other chronic illnesses.
I kind of got thrown into the world of patient advocacy and I loved it! Teaching people about this new life experience I had became important to me. Seeing as the majority of people don’t know what ankylosing spondylitis is, I felt that I had a lot of work to do.
Originally, my blog was viewed by mostly friends and family members. It started to pick up a few months later and I was getting messages on Instagram about how people felt seen and heard for the first time since developing their disease.
I found my purpose
Having an invisible disability gave me the courage to speak out and become a voice for the community. Through my writing and my work on Instagram, I feel like I’ve found my purpose. And that’s for me to bring light to those with invisible illnesses like AS and make sure that our disease is more commonly known. I don’t want anyone with an invisible illness to feel invisible, because we aren’t, even if some of our symptoms are.
How much about your AS do you share with others?