"Coming Out" As A Sick Person
My first instinct as a newly diagnosed person with AS (a type of axial spondyloarthritis) was to hide it. I was confused, relieved, upset, depressed, just about every emotion. I needed to figure out what was going on with my new life and my “broken” body.
Initially, I tried to hide it
I walked out of the rheumatologist’s office that day overwhelmed with information. He was speaking a mile a minute while I was thinking “Anky-what?” and trying to keep up. I went home and immediately started Googling what I now knew I had.
Being diagnosed with something that will be life long is an extremely hard pill to swallow. I was diagnosed at 22 years old and I felt like my young adult life would be over. I didn’t know how to explain this to my friends.
Telling people was difficult at first
After I came out of my post-diagnosis depression, I decided that I wanted to tell people about what was happening to me. I wasn’t exactly sure how, but I knew I would figure it out as I went.
I told a few of my other close friends and for the most part, they took it well. A few of them couldn’t grasp the concept of me never getting better, as expected. We’re no longer as close as we used to be, and that’s okay.
The more I explained it to my friends the more it became real in my head. “I really am going to be sick and in pain forever” is a thought I remember having. I still have these thoughts, but now they’re less powerful than they used to be. I’m warming up to them.
Going “public” with my illness
I’m a big Instagram user. I post a lot of my life on that app. I knew something inside of me wanted me to shout to the masses that I had AS, but I’m not sure why. Something was pushing me towards being honest about my life.
On March 3rd, 2018, I “came out” on my Instagram as having ankylosing spondylitis. I wrote a long caption about it and what the next few months were going to look like to me. I was scared because I didn’t know what to expect.
What shocked me was the outpour of love and support I received. It still blows me away today, the amount of support I have behind me on my journey. Posting that Instagram photo was the best thing I could have done for my mental health-related to AS.
I’ve made friends from all over the world that have AS and we contact each other for help and support when we’re going through a rough time. I’ve even made real-life friends through the community on Instagram. I’m so grateful for the chronic illness community I found online.
In my opinion, and it’s completely just my own, is that telling your family and friends, and even complete strangers online is a great idea. It’s helped save me in times of breakdowns and frustrations, to be able to talk to my friends and family without being judged or misunderstood. I don’t try to hide anything from the people that I love anymore. They just want to help me, and that’s the greatest thing I could ask for.
Does reading AxSpA patient stories help you in your journey?