Can you imagine how your diagnosis and treatment journey would have gone differently if you had been treated as a reliable narrator of your own lived experience right from the start?
For me, so much suffering could have been avoided if I had been believed.
My pediatrician could have easily diagnosed my migraine disorder when I was 9, as soon as my mom reported my symptoms to him: severe headaches, light sensitivity, and nausea. But he didn’t take my symptoms seriously. So instead I went undiagnosed until the 22, when the pain, nausea, and light sensitivity reached a level that was utterly debilitating. Even then, it took several months of serious, traumatic symptoms to get a diagnosis. But why? According to the Migraine Trust, 14.7% of the world population suffers from migraines, and about 2% suffer from chronic migraine. It’s a remarkably common disability, and it never should have taken more than a couple appointments to get diagnosed and start a treatment plan.
My autoimmune diagnosis, undifferentiated spondylitis, is less common. But it could have potentially been diagnosed at 22, if I had been referred to a rheumatologist for my widespread joint pain, fatigue, and gastrointestinal symptoms. When I asked several primary care doctors and specialists about these widespread symptoms, they old me it was “just stress” again and again. I was never offered a referral to rheumatology or any blood work, testing, or imaging.
It took three years from the start of my autoimmune symptoms for me to get diagnosed with spondylitis, and honestly that’s a remarkably quick diagnosis compared to most autoimmune patients. Some take 15+ years to get a diagnosis. To get my diagnosis as quickly as I did, I had to spend hundreds of hours of doing my own research and analysis of my symptoms, and I had to be persistent and persuasive in my pleas for diagnostics. I had to start bringing my husband into appointments with me to be taken seriously.
It shouldn’t have to be like this. Patients shouldn’t have to go hunting for a diagnosis themselves. They shouldn’t be ignored because of their gender or any other aspect of their identity. Patients should never have to wait years for a diagnosis for a disabling disease.
We need paradigm shift in the medical world. Patients need to be believed when they report serious symptoms.