As far back in my memory as I can recall, something always hurt. Whether I was home from school as a third grader with a crippling headache, or in high school with chronic knee pain. Whatever the pain, it was always there. People I knew would always roll their eyes when they heard me complain about yet another thing that hurt, or heard me worry about another thing potentially plaguing me. I do not blame them; I never thought I would be the person with the chronic illness.
My late teens and early twenties were miserable for me. I couldn’t keep up with people, I was chronically depressed, full of anxiety and bad habits, and unwilling to put in efforts that would allow me to succeed. I hopped between doctors and emergency room visits. My family physician, let’s call her “Dr. Dee”, was lovely and sweet, but I don’t think she really understood what I was attempting to convey.
I would visit Dr. Dee monthly, and like a broken record, we would repeat the same lines over and over. “I’m certain it’s depression”, Dr. Dee would say, and I would look disappointed at yet another dead end. Doctors visits, blood work, and urine samples were my near monthly routine for several years. The only thing that those tests revealed is that I am anemic and vitamin D deficient. This several year cycle of doctors office – blood work – clean results – being told I’m depressed – increasing frustration – was halted by a breakthrough: ALLERGIES!
I never thought that I would be so happy to find out something was clinically wrong with me. After being poked with a needle 152 times, the results were in! I have anaphylactic allergies to cardamom, sage, rosemary, and almonds, but have a colour coded list with about 20 other things that make me very ill. Something finally made sense. All the foods that showed up on the allergy list were things I complained about eating as a child – things I always complained gave me horrible headaches and an upset stomach.
In February of 2015 I started taking antidepressants. Wellbutrin was what Dr. Dee put me on while we waited through 16 different rejection letters from rheumatologists in Alberta, Saskatchewan, and Manitoba. I started a job working in a pottery studio with a boss who didn’t understand sickness, and watched myself begin to wither away. A very abusive relationship, unstable friendships, a tense workplace, and Wellbutrin were the lead to my downfall…
With the renewal and growth of spring and summer came the fading and falling of me. Over half of my hair fell out over the summer, and I lost 30lbs in 30 days. I was gaunt, and yet a history of horrible body image, depression, and a desire to be thin led me into some horrible eating habits (later diagnosed as anorexia). Wellbutrin and not eating completely shut down my motor function, and I ended up in the emergency room. A lovely doctor, lets call him “Dr. Hip” believed the pain I felt. He said he thought I may have fibromyalgia, and sent a couple referrals to some specialists he knew.
A cardiologist, let’s call him “Dr. Heart” examined me. He told me, quite frankly, that I was depressed, and that everything I felt was just in my head. According to Dr. Heart, all I had to do was think that I want to feel better, and then I would. Another, very insulting, dead end.
After a few months of waiting, a letter arrived for me: “Dr. Fixit – Rheumatology”. I was ecstatic! In late October 2015 I was diagnosed with Fibromyalgia. Dr. Fixit believed me, and she handed me a paper that had all of my symptoms on it and said “circle all those that apply” – I circled the whole page. Three years of begging doctors to listen to me, and having blood test after blood test, led me here. Unfortunately, Dr. Fixit informed me that there is no Fibromyalgia cure, and that living with it will take a lot of patience and work.
I was taken off of that medication, I gained back the weight and kicked anorexia’s ass. I ended that abusive relationship, and quit that shitty job. I learned to surround myself with people who care enough to ask how my pain levels are. I’m learning still, and struggling some days, but things are looking up. My advice for those who are looking for a diagnosis is to be patient. I know how irritating having doors slammed in your face is, but sooner or later, one of them won’t slam, and one of those many doctors will know what ails you. Just keep doing what we Spoonies do – keep on keeping on.