My name is Charmaine I am a physician and I was completely unprepared for what was to happen to me. In 2015 in Tucson Arizona I required emergency surgery to debride my right knee. It had been swelling over months and became unbearable. The fluid from the knee showed many white cells so the physicians decided to treat it as septic arthritis. I was treated with six weeks of broad spectrum antibiotics. At the end of this time every joint in my body is involved. I could not walk, I could not chew my food (as my TMJ joint’s were involved), I could not straighten my arms, I could not turn my head, and I could not pull the toilet paper off the holder.
Under pressure from my insurance carrier, I flew home leaving my partner to get our travel trailer home back to Canada. Once home I was treated with prednisone with rapid resolution then given a diagnosis of autoimmune inflammatory arthritis.
I had never been sick before. Now I’m on the other side of the physician’s desk. You don’t just catch an autoimmune disease, do you? My physicians did not seem interested when I asked “why? Why do I have these symptoms?”.
I remember a pivotal moment when I was prescribed my first DMARD’s. (Disease modifying anti rheumatic drugs). I naively asked “when they work, how long do I take them for?”. The rheumatologist looked rather surprised and answered “well, of course forever”! I realized at this moment I was now a patient: I knew academically perfectly well they would be life-long but emotionally, I was still in the “what has caused this and how can I correct it mode”.
Although I had terrific family support, I still felt ashamed - Shame that this has happened to me. It wasn’t helped when friends would say “what, you? You are so health conscious!! There was one time when I was having a terrible flare and had a painful red eye, when my rheumatologist wouldn’t/couldn’t fit me in, that I felt abandonment...and anger, “after all my years of working as a physician when I always responded to someone in need”. I felt guilt and anxiety - I was due to help my son (in Australia) with childcare and really really didn’t want to pull out of my obligation.
So - disbelief, guilt, shame, abandonment, bewilderment were all feelings I had.
I decided to see a Naturopath as well. Stunned! I thought I was eating a good diet - low fat. She stood that on its head as she spoke of the body’s need for good fats...and pointed me in the direction of knowledge that I was completely ignorant of. (AutoImmune Paleo Diet and Anti-inflammatory diets).
I spent hours on the internet seeking information and community. There are a lot of rabbit holes to fall into. Hence the importance of a website like Dragon Claw: a place for information, sharing of stories, and support. A virtual community. It means so much to find your tribe!