When I search for “autoimmune disease” or “immune-mediated disease” on YouTube, I get a lot of results, but very few of them are about ankylosing spondylitis (AS). It’s disappointing that so few videos are made by people with AS. I’m looking for someone to connect with, who understands, and who has a personality. Something real.
Most of the AS videos I’ve found are from a doctor’s point of view, are stretch- or exercise-related, are not appropriate for everyone with the disease, or are from the perspective of someone who has magically “cured” their AS. Some of these cures are straight-up ridiculous, while others are a super-secret protocol that requires you to sign up with a life coach to learn more.
However, a few great video resources are from people who showcase real life with AS. One of these is the beautifully made documentary, “In My Bones,” directed by Sophie Ibbotson, whose father was diagnosed with AS later in life.
The documentary delves into the diagnosis process, including misdiagnoses and reluctance by doctors to provide a rheumatologist’s referral. It reveals the debilitating, sad, and frustrating process of chronic pain, job loss, and grief that comes with a diagnosis. While this was hard to watch, I was deeply appreciative to see the scope of truth and vulnerability.
One of the quotes broke my heart:
“You lose so many of your friends. It’s not that they don’t understand. It’s that you can be OK one day but then not OK the following day. And you have to tell people you can’t go. You’ve made plans, and you’re having to let people down. In the end, they just stop asking you. … It’s a cruel disease, horrible.”
The film’s subjects range in age, background, fitness level, and health, which gives viewers a well-rounded view of how AS affects people’s daily lives. Some can still move and play sports, while for others, little things such as getting up and making coffee can be challenging. The documentary looks at medications and side effects, too.
Instead of AS being reduced to “back pain” (which we know isn’t the case!), the subjects open up about the mental health problems as well the joint, skin, eye, and digestive issues that accompany the disease.
And while the documentary is profoundly deep and dark, it ends on a positive note. It acknowledges the grief process and highlights the importance of not giving up. As one person says:
“You’re grieving for the life that you’ve lost. The process is numbness and shock, then anger, depression, guilt, bargaining, then acceptance. And acceptance isn’t just lying down and being a victim. It’s saying, ‘This is the way the world is but I’m not going to leave the world like that, I’m going to do something about it.'”
It was deeply heartening to hear people talk so intimately and with such great detail about my disease. It’s like I had suddenly heard someone speaking my language — our language. And I appreciate that because it’s easy to feel alone with AS.
Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.