I Thought I Had Come to Terms With my Illness...I Was Wrong
In the short time I’ve been a part of the AS community, I’ve been able to connect with hundreds of other sufferers just like me. We talk about all sorts of things. Our pain, how our social lives are impacted, different types of treatments we’ve tried, and how and when we received our diagnosis.
The struggle of receiving a diagnosis
It’s no secret that receiving a diagnosis for AS is no easy feat. There’s a whole long list of criteria we have to meet, and don’t even get me started on the extra challenge us women have because of the notion it’s a “man’s disease."
One thing I often speak with others about is how they felt the day of diagnosis. Feelings often range from joy to complete and total heartbreak. Joy because we finally have an answer, but heartbreak in knowing that things will never be the same.
Relieved to have a diagnosis
On the day of my diagnosis, I was over the moon. Saying that out loud feels strange, but it’s the truth. I finally had the answers to what was causing my body to fail me. I now knew I wasn’t crazy, and in fact, this was all really happening to me. This also opened the door to treatment, and I was so beyond ready to get back to living again.
Treatment and hope for the future
I started Humira immediately following my diagnosis. During this time, I experienced what I can only describe as a total shift in mindset. I was constantly preaching positivity to my fellow chronic pain sufferers, and I honestly felt a sense of peace that I hadn’t felt in quite a while. I was really proud of who I had become, but unfortunately, reality set in and it didn’t last.
My treatment plan failed me
I was on Humira for 6 months when my body developed an allergy to it. This marked the beginning of my “downfall.” Humira had completely changed my life for the better, and all of a sudden, all the hope and faith I had in living a normal life was gone.
At that point, I decided I would try to stay off biologics. This was also as COVID-19 was unfolding, and being on biologics concerned me. After a few weeks of being biologic free, I noticed the fatigue and pain of AS returning. It had honestly been so long that I had all but forgotten what this pain was like. I called my doctor and started Enbrel, only to find that I was allergic to it as well.
My AS is here to stay
It has taken some time, but I think through these events, the reality of this disease has finally hit me. When I was initially diagnosed, I looked to the future with hope that things would return to how they were before AS. Now, I'm seeing and understanding that this disease is relentless, and it is a life long sentence. There is no cure, and that is a hard pill to swallow.
An uncertain future
If I could describe who I’ve been lately in one word, it would be broken. Anxiety and depression have become a part of my daily life. I’ve shut down and gone silent on social media. I feel like a total hypocrite. I know that this too shall pass, but right now, the future honestly scares me. I don’t know what will happen tomorrow, or next week, or next month, but I hope to be able to come to terms with this diagnosis and move forward with that same sense of hope I felt a year ago.
Do you use the word disability to describe your AS?