My Joint Pain Wasn't Taken Seriously Until I Was Diagnosed with Another Autoimmune Disorder (Part 1)
Although I’ve struggled with joint pain since childhood, it didn’t lead me to seek additional testing or a second opinion until shortly after college graduation.
In the midst of developing severe gastrointestinal symptoms which I now know are due to Crohn’s disease (another autoimmune condition), I began experiencing crippling pain and swelling in my joints, in addition to fevers and overwhelming physical fatigue. Over-the-counter medication and treatment options were providing no relief and I was desperate.
I was dismissed by several doctors
I began seeing a rheumatologist, the same one that many of my family members had been seeing for years. Without running any blood work or ordering additional tests, he announced that I must be living with fibromyalgia and that a low-dose stimulant would help. While I wasn’t sold on his diagnostic skills or that feeling like I was being taken seriously in his office, I wasn’t sure how to advocate for myself otherwise.
I was 23 and female.
My serious and significant complaints were being dismissed by a doctor that my family knew, trusted, and even admired.
I felt so discouraged
For several years following this experience, I was in and out of doctors' offices, the emergency room, and the hospital.
Presenting with crippling GI and rheumatic symptoms, I was greeted with responses ranging anywhere from: “Wow, you must really want attention,” to “This is all in your head. If you get your anxiety and depression treated your health will be fine,” to “You must be struggling with an eating disorder,” and all the way to “I can’t do anything to help you.”
I felt so discouraged that at one point, I seriously considered ending my life. I felt hopeless and helpless and I didn’t see a light at the end of the tunnel.
Getting an RA diagnosis
Fast forward about 6 years from that initial appointment with my family's rheumatologist and after I’d received a Crohn’s disease diagnosis. While I was still far from remission, I was taken a little more seriously by my own care team at this point.
Putting everything together
I’d started a gut-specific biologic medication which had taken the devastating edge off and begun reducing the severity of my GI symptoms, and little by little I was feeling slightly more human. During an appointment with my gastroenterologist, I mentioned that I’d been more and more couch-bound lately due to the change in weather and the overwhelming pain I was experiencing in my knees, ankles, and feet.
My doctor took one look at me and said, “You know, many patients with Crohn’s disease also have some type of arthritis.” He sent me to a new rheumatologist who ran a few tests and reviewed my medical history, including the painstaking journey I’d traveled until Crohn’s disease was diagnosed, and he diagnosed me with rheumatoid arthritis.
Why was I dismissed for so many years?
Unfortunately, this didn’t come as a surprise to me. I knew that many autoimmune disease patients have 2 or 3 conditions. Once your body attacks itself, it’s easy for that to be amplified in other systemic ways; my body felt like it’d been under assault for years.
What did leave me mystified, though, was the fact that this diagnosis likely could've been made a decade earlier. However, at the time I was female in my early twenties and generally dismissed by most of the physicians that I saw.
In my next article, I'm going to dive into this idea of being dismissed as a patient primarily reporting pain, and share some tips to help you overcome many of the hurdles I was stuck behind for far too long.
Right now, what RA tips would most be helpful for you?