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When I first went to a doctor to talk about the painful symptoms I was experiencing, I was told that it was just “contact irritation.” But I was in extreme pain. Everyday tasks were too challenging, and I had lost my desire to socialize. And to make matters even worse, it felt like nobody really understood or believed what I was going through.
It took years before I finally begged the doctor to reassess my symptoms. By then, they had worsened. I had developed back pain, joint pain, chronic fatigue, and digestive issues. The doctor simply advised me to eat better and exercise more. But this time, I protested. Soon after, I was diagnosed with ankylosing spondylitis (AS).
I recently wrote an essay about my experience living with AS. In the piece, which is going to be part of an anthology called “Burn It Down,” I open up about the anger I felt when I was first diagnosed with the condition. I was angry at the doctors who seemingly dismissed the severity of my symptoms, I was angry that I had to go through graduate school in pain, and I was angry at my friends who couldn’t understand.
Although getting to a diagnosis was a difficult journey, the great challenges I faced along the way taught me the importance of advocating for myself to friends, family, doctors, and anyone else willing to listen.
Here’s what I’ve learned.
While doctors are knowledgeable, it’s important to read up on your condition so that you feel empowered to ask your doctor questions and be involved in the decision-making process of your care plan.
Show up to your doctor’s office with an arsenal of information. For instance, start tracking your symptoms by jotting them down in a notebook or in the Notes app on your smartphone. Also, ask your parents about their medical history, or if there’s anything in the family you should be aware of.
And, lastly, prepare a list of questions to ask your doctor. The more prepared you are for your first appointment, the better your doctor will be able to make an accurate diagnosis and get you on the right treatment.
Once I had done my research on AS, I felt much more confident talking to my doctor. I hashed over all my symptoms, and also mentioned that my father has AS. That, in addition to the recurring eye pain I had been experiencing (a complication of AS called uveitis), alerted the doctor to test me for HLA-B27 — the genetic marker associated with AS.
It can be really hard for others to understand what you’re going through. Pain is a very specific and personal thing. Your experience with pain may be different from the next person’s, especially when they don’t have AS.
When you have an inflammatory disease like AS, the symptoms can change every day. One day you could be full of energy and the next you’re exhausted and unable even to take a shower.
Of course, such ups and downs might confuse people about your condition. They’ll also probably ask how you could be sick if you look so healthy on the outside.
To help others understand, I’ll rate the pain I’m feeling on a scale from 1 to 10. The higher the number, the more extreme the pain. Also, if I’ve made social plans that I have to cancel, or if I need to leave an event early, I always tell my friends that it’s because I’m not feeling well and not because I’m having a bad time. I tell them I want them to keep inviting me out, but that I need them to be flexible sometimes.
Anyone who isn’t empathetic to your needs probably isn’t someone you want in your life.
Of course, standing up for yourself can be hard — especially if you’re still adjusting to the news of your diagnosis. In hopes to help others, I like to share this documentary about the condition, its symptoms, and its treatment. Hopefully, it gives the viewer a good understanding of how debilitating AS can be.
If you need to adapt your environment to fit your needs, then do so. At work, for instance, request a standing desk from your office manager if they’re available. If not, talk to your manager about getting one. Rearrange items on your desk, so that you don’t need to reach far for things you often need.
When you’re making plans with friends, ask that the location be a more open space. I know for me, sitting in a crowded bar with tiny tables and having to force my way through swarms of people to get to the bar or bathroom can aggravate symptoms (my tight hips! ouch!).
This life is yours and no one else’s. To live your best version of it, you must advocate for yourself. It might mean stepping out of your comfort zone, but sometimes it’s the best things we could do for ourselves that are the hardest. It may seem intimidating at first, but once you get the hang of it, advocating for yourself will be one of the most empowering things you’ve ever done.
Lisa Marie Basile is a poet, the author of “Light Magic for Dark Times,” and the founding editor of Luna Luna Magazine. She writes about wellness, trauma recovery, grief, chronic illness, and intentional living. Her work can be found in The New York Times and Sabat Magazine, as well as on Narratively, Healthline, and more. She can be found on lisamariebasile.com, as well as Instagram and Twitter.