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Advocating For Yourself and Ankylosing Spondylitis

By Lisa Marie Basile, as told to Hallie Levine

I was officially diagnosed with ankylosing spondylitis in 2017 after living with nearly a decade’s worth of debilitating symptoms like back and hip pain and fatigue. I know well what it’s like to chase a “mystery” illness for years and to feel alone and unsupported. But it also made me realize how important it is for patients with AS to advocate for themselves so they can get the therapy they need and live their best life possible. It may seem intimidating at first, but once you get the hang of it, you’ll feel empowered and back in control.

Speak up for yourself.

It’s imperative that you be transparent about what you need from friends and family. I’ll be honest: I need help a lot. I hate asking for it, but it’s best to be straightforward. When I make plans with someone, I let them know that the day of, I may feel awful and have to cancel, and not to take it personally. Recently, I was on an 8-hour car trip with friends. I was sitting in the back seat, and after a couple hours it felt like my hips were on fire. I desperately needed more leg room, but

I felt guilty asking. After all, everyone was uncomfortable and tired. But I also realized that everyone in the car cared too deeply about me to see me in pain. I explained, and they were happy to oblige. It’s super awkward to ask for help sometimes, but remember: You’re not trying to milk a situation. There’s a difference between entitlement and asking for what you truly need.

The same holds true for medical professionals. If I feel like a need a blood test or an X-ray, I ask for it. If they refuse, I demand that they note that in my file. It makes doctors think twice about shooting me down. Case in point: Recently, I went to see a rheumatologist for pain. I was sure my inflammation was out of control, so I asked for a specific blood test, known as a C-reactive protein test, to measure it. He dismissed me, saying that I didn’t seem as bad off as some of his other patients. When I pushed back, he caved. Turns out my instincts were right.

This also includes being forthright about pain. I cannot speak for every doctor, but a lot of them think in terms of numbers and solutions. They need to hear a number on the pain scale to jump into action. When you go in to see them, be prepared. Don’t waver and say “Oh, I guess my pain is a 2 and sometimes a 4,” when in reality on your best days you hover between a 6 and a 9.  A lot of patients living with chronic pain just assume that’s how it will always be and downplay their discomfort. You shouldn’t have to live like that. There may not be a solution, but you can always ask.

Keep a journal.

It’s important to keep a daily log of symptoms, whether you jot them down in an actual diary or notebook, or in an app on your smartphone. This will quickly help you pinpoint triggers like food and lifestyle. In my situation, I

realized that stress was my No. 1 trigger. It makes sense, because we know stress sets off your body’s inflammatory response, which worsens AS. The longer you’re exposed, the worse it can become.

When I was first diagnosed with AS, my symptoms were the worst they’d ever been. At the time, I had a very intense, demanding job that involved a 3-hour commute. I had to skip pretty much everything that kept me grounded, including therapy and swim classes. It was like my body just could not function in that environment anymore. Other triggers of mine include alcohol, sweets, and processed foods. I tried going vegetarian for a while, which made no difference, but when I switched to a diet higher in animal protein, I felt better. It’s all about figuring out what works for you and what doesn’t.

Ask questions -- lots of them.

Every time you walk into your doctor’s office, make sure you have a list of at least five questions with you. Most doctors only allot 15-20 minutes now to routine appointments, and this is a good way to make effective use of your time. I also recommend doing your own research. This includes getting up to date on your own family history.

Right before I was officially diagnosed, I learned my own father has AS. My rheumatologist had just had me take an HLA-B27 test -- a blood test used to identify certain autoimmune diseases. When I rattled off the list of diseases to my father, he nonchalantly mentioned that he was diagnosed years ago. His case had always been so mild it had never really impacted him. But it was an important piece of the puzzle when it came to putting together my final diagnosis.

Stay active.

It’s so important to physically move your body when you have AS. If you don’t, you will suffer. You’ll stiffen up and your pain will worsen. It’s hard when you don’t feel well, but aim for 30 minutes most days of the week. I feel much better the weeks I do yoga every day than those I don’t. Even if you’re in a wheelchair, you can still do seated exercises to keep your strength and stay flexible.

It’s important to stay mentally active, too. It can be super lonely when you live in constant pain. Try to do something just for you every day. It can be jotting down your emotions in your journal, talking to a therapist, or doing some type of crafting. It can even be an in-person or virtual support group, as long as you find it helpful. Sometimes they can be incredibly validating, and other times depressing when you realize that not everyone’s experience mirrors your own. Find something to do that uplifts you and gives you joy, and you’ll find both your physical and mental health will be in a much better place.

WebMD Feature

Sources

SOURCES:

Lisa Marie Basile, wellness editor and ankylosing spondylitis advocate, New York City.

Arthritis Foundation: “How Stress Affects Arthritis.”

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