An illuminated smartphone sits on a table with a microphone prominently laid next to it ready to share an AxSpA diagnosis

"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.

My depression lasted for a solid month after my diagnosis. I only saw my best friend and my family. I didn’t know how to feel or how to fully process what my new life would be, so I isolated myself from everyone who wasn’t extremely close to me.

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.

My opinion

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.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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