When I’ve learned about ankylosing spondylitis it was immediately made clear that it’s not simply “back pain”. I can relate. I’m so sick of people assuming I’ve just hurt my knees somehow. Yet, these personal frustrations have helped me realize how important it is to listen to people with different experiences, and not immediately try to fix them, but learn from them.
Living with a long term condition, I think we all get lots of well meaning but unhelpful advice. For my Juvenile Idiopathic Arthritis, an autoimmune disease, I get offered a lot of herbal remedies for joint pain (good, but not better than biologics) and suggestions about exercising (like I haven’t seen a physiotherapists)…and of course the blank stares from people wondering why my joints act like grandma’s.
As if mornings weren’t slow enough! I’ve learned to make mornings as smooth as possible by laying out my clothes the night before and setting my alarm early enough so I can stretch in bed before getting up. I do breakfast before washing up, so I can take painkillers sooner rather than later.
Avoid the sun
When you have different risks, you take extra care. Starting Humira it was stressed to stay out of the sun and wear high SPF, because of the increased risk of skin cancer. Other people told me getting vitamin D was essential to my health and sunscreen was overrated! Long story short, I do go outside, but always with sunscreen. Biologic or no biologic, healthy and protected skin is a win.
My nickname growing up was “pin cushion” from all the needles I got. It’s part of JIA. As a result, I’m not afraid of needles… but in the last couple years I had allowed myself to grow increasingly anxious about taking responsibility for my health after leaving home. I did my first “JIA doodle” after a misfire episode with my Humira pen. After reacting to the sting of the drug, pulling the needle out too soon, and spilling expensive medicine all down my leg, I broke down crying from the weight of my faulty immune system. I felt weak and helpless. In those moments, there are no words…so I pulled out my paint and put the colors down. My account is what followed. Oh, and I’m happy to report the next injection went fine.
@jia_doodles was diagnosed with Juvenile Idiopathic Arthritis at age three and has since used a combination of drugs, exercise, sleep, and diet to combat the course of the disease. Currently a university student in the Midwestern United States, she spends her days attempting to balance her health, homework, and rehearsal while she studies theatre arts. She started her Instagram account to express her frustrations with JIA and it’s treatment, and has gained strength from the online community.