Kylie G. - Diagnosed Age 18
I have had symptoms for as long as I could remember. At a very young age, I experienced joint pain, fatigue, and what I recognize now as Reynaud's phenomenon. I started my journey as a preteen trying to find a cause for my migraines. Later, when I found out that it was abnormal to be in constant pain, I tried to get help for that. Often, doctors prescribed psychotropic medications and recommended that I lose weight. I accepted that for a while, until pain and worsening photosensitivity forced me to seek alternatives. I was bounced around from specialty to specialty, eventually being pegged as a drug seeker.
A ray of sunshine came when I was referred to a rheumatologist. Yes, they agreed I had some form of rheumatic disease but were very unsure of which it was. After moving towns at 18 years old, I was referred to a different rheumatology clinic. It was there that I was given a full blood work up, physical exam and diagnosed with mixed connective tissue disease. I started treatment for lupus. I continued treatment for lupus for a few years, then when I needed to move, I was referred to a new clinic.
Upon visiting the new rheumatologist for the first time, she looked at me after a short physical exam and told me that I, in fact, did not have a connective tissue disease. I was diagnosed with fibromyalgia, and she removed me from all of my medications. It was devastating to my health. I spent weeks in the hospital. It was years before I had the courage to see another specialist. In that time, I developed discoid lupus lesions. They were biopsied by a dermatologist who refused to re-diagnose me as having SLE because "discoid lupus and SLE together is very rare". I couldn't handle the devastation that the constant disbelief causes. I refused care for a long time.
Fortunately, my primary care submitted a referral to an out of town rheumatologist even though I refused. I drove hours for the appointment. The doctor looked at my malar rash for the first time and told me that she knew I had lupus just by looking at my face. A few years later, I still see her. She changed my life. I've finally received a high school diploma and am successful in college.