Removing the Scary Stigma of Biologics
I went into my first rheumatology appointment of the year last week with one thought on my mind: I think I might need to go on biologics again.
I'll be honest with you. It's an idea I've ignored, neglected, denied, and loathed for a long time now — ever since stopping Humira in 2018 after a shockingly awful bout of shingles (presumably induced by Humira's suppressive effect on my immune system). Side note: Shingles is awful. The worst pain I have ever, ever experienced — but don't worry, once you get the antiviral medication, chances are you will get better rather quickly.
Managing AS without biologics
Humira also wasn't super helpful, so my doctor took me off of it. So for the past two years, I've been sort of managing ankylosing spondylitis with NSAIDs, exercise, diet, CBD, and stress management. It has worked well a lot of the time. It has also not freaking worked at all at times. When I flare, I flare. I mean, flare-ups have become big scary ghoulish monsters that take me OUT.
This year, due to COVID, I lost one of my main sources of wellness: A swimming pool studio I attended by hydrotherapy/water workouts. The low-impact workouts in water were great on my back, my mobility, my joints, my blood pressure, my stress levels, my extra weight — and the studio was part of a wellness ritual for me. Fitting in pool time gave my days structure, meaning, hope. It was part of the whole package of how I cared for my mind and body.
And then COVID took it away. It's been at least eight months since I've been in the water and I feel it. Since, the flares are not too often — but they are heavy and horrible. And I've had an ongoing knee issue.
My doctor thinks it might be time to try one
"But I'm scared of biologics," I tell her. "The whole thing — the needle, how biologics are made, the fact that they might cause cancer."
She responds with care and compassion and says, "The word itself — biologic — tends to trip people up. They think of it as this huge scary thing, and I get it. But we've seen a lot of success with them, and there's a good amount of research now about them. What your body does to you is also scary, if untreated, though."
She's a doctor, I get it. She knows drugs have helped patients get their lives back.
I have to think about it
I tell her I'm in denial that I need them, that I even have periods of denial around having a lifelong disease. I tell her I'll think about it, and that I need to work on removing some of the stigmas around the drug. For example, is so much anti-biologic talk in AS forums because people think they're side effect and cancer-causing. People also think they're just creepy (since they're made from living organisms) and that AS patients should go a more holistic route, which I think is a) not always realistic and b) shaming to patients who choose medication.
I think of the patients who've had better lives, who can walk again, who have energy again; it's a reality and a conversation I do need to have with myself, especially as time goes on and my flares continue. While I believe that my health can be managed for now without them, I can't deny that I probably will need them one day.
Do you use the word disability to describe your AS?