Fourteen Years — My Ankylosing Spondylitis Journey
I will never forget November 19th, 2019. My new rheumatologist broke the news this way: “I bet you have been told your entire life that your weight was the cause of your back pain. I want you to know it wasn’t, although weight loss can certainly help. We see the damage, and you were right - you have Ankylosing Spondylitis.” The tears instantly started. The official diagnosis brought both fear and elation; I finally had a diagnosis after fourteen years of medical gaslighting, incorrect diagnoses, and severe sacroiliac joint and lower back pain.
My symptoms of severe back pain started when I was 18 years old. I had just graduated high school, and I was working at a fast-food restaurant while attending nursing school. My hips and lower back would ache so badly that when I finally did actually hurt myself badly enough while throwing garbage in a big trash bin, it was a relief. Given the injury happened on the job, I had to file for worker’s comp and take about a week off of work while attending physical therapy. From there, the pain just continued, but at least I had some sort of validation that something wasn’t quite right.
I’d go to the chiropractor nearly every week, and nothing would help. Sure, my bones would crack, but I would be back to the same pain level the next morning. This cycle continued until I was 22, and during a routine physical, my primary care physician at the time noticed I had a fever. She asked how I was feeling, and I said I was run down - after all, I was still working full time and I was also in my final year of nursing school. She added some additional lab work, and about a week later, she called to inform me my lab work was concerning and that she was sending me to an oncologist. The oncologist informed my family that she thought I may have lymphoma, but she needed to run additional testing. She eventually realized she didn’t have the answers and sent me to an infectious disease specialist. The infectious disease specialist did diagnose me with a recurring Epstein-Barr virus, but he also didn’t think this was likely the entire issue. I then ended up with a rheumatologist referral. The rheumatologist took my history, pressed on some joints, and asked about my tenderness. Many of my joints were tender, and he eventually left the room and came back with a brochure. He handed me the brochure and said, “You have fibromyalgia and we don’t treat it.” I left completely unsure of what I was supposed to do with this information, especially now that I had made the choice to drop out of college and work full time as I was too sick to continue my current lifestyle. By this point, I had also lost my student health insurance, and thus, all of this medical debt was falling squarely on my shoulders at 22 years old.
I spent the next 13 or so years feeling like the diagnosis of fibromyalgia was wrong. I could literally hear my sacroiliac joints cracking and snapping when I walked or pressed my legs together. I started to develop other symptoms that also didn’t match the fibromyalgia diagnosis - costochondritis, significant enough inflammation in my wrists and my left foot requiring surgeries, and even more progression of my debilitating back pain. If I thought the pain was bad when I was younger, the pain was barely tolerable at 35. At this point, my new primary doctor was focused on weight management solely, and I’d lost 50 pounds with no improvement. I remember seeing a commercial on TV about back pain causes and a quiz for Ankylosing Spondylitis. I took the quiz and it suggested I discuss AS as a possibility with my doctor. I also hadn’t seen a rheumatologist since my fibromyalgia diagnosis, and my lab work was still consistently concerning (inflammatory markers, especially), and I had been in physical therapy for years. I finally got the courage to advocate for myself and ask my doctor for a rheumatology referral. She said, “I don’t really think you need one. But, if you want to get a second opinion, that’s fine.” Then I waited 18 months for a rheumatologist appointment.
Once I received my diagnosis, I began a treatment plan. I learned how to protect my compromised immune system, and have managed to avoid getting a severe infection thus far. I was able to finish my degrees after transitioning to education, and now my work is in instructional design. I am thankful I transitioned to the field I did as I would not have been able to do direct patient care as a nurse with my treatment plan and the steps I have to go through to avoid infection. However, I am currently stable and have a much better quality of life with my current treatment plan.
I’m sharing this journey to remind chronic illness warriors to continue to advocate for yourselves. You know your body better than anyone else, and you know when something isn’t right. There were many times when I thought about just giving up and filing for disability, and I’m so glad that I didn’t. Even though fourteen years is a very long time to receive an accurate diagnosis, and the experience was one of the hardest journeys I’ve ever been through in my life, there is more awareness surrounding chronic illness than ever before. In the future, I’m hoping to develop free online courses for individuals and families battling chronic illnesses as I also believe in equitable access to high-quality online education. I feel that developing courses of this nature will bring me back full circle - from misdiagnosed patient to chronic illness advocate.
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I will never forget November 19th, 2019. My new rheumatologist broke the news this way: “I bet you have been told your entire life that your weight was the cause of your back pain. I want you to know it wasn’t, although weight loss can certainly help. We see the damage, and you were right - you have Ankylosing Spondylitis.”
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