Hi, I’m adrienne.
It’s hard to find the appropriate metaphor for the “autoimmune” existence. Rollercoaster? House of horrors? Dumpster fire? I have felt every version of these experiences for more than two decades of my life…my entire adulthood.
In my youth, I began having problems in my late teens. First a stress fracture at 17 then vertigo in my 20s. By my late 20s my whole body was crashing. I became reactive to every food I ate, broke out in full body hives that no Western doctor could cure. Exercise made my joints ache. I didn’t sleep for months and thought every night that I wasn’t sure how I would make it one more day. I was 27 and I felt 85. I struggled with chronic pain, relentless vertigo, and horrible digestion pain every evening. I could barely stay awake in the evenings with the exhaustion, I would feel a little better by morning and then it would start all over again each afternoon.
In a stroke of good luck, my sister suggested a naturopath who helped me diagnose my many, many food reactions over the next few months. I was diagnosed Celiac, and have been diligent at avoiding food sensitivities, but every time I changed my diet I felt a little better and then symptoms would eventually return. I was doing all this while working hard on my career and trying to enjoy my new marriage and home. After looking for scary diseases and doing every kind of exam under the sun, including ultrasounds, ear balance tests and brain scans, I was finally diagnosed as generally “autoimmune.” I was told my body has a glitch that makes it want to attack itself. When you hear this, you learn to not trust your body.
Every stressful life event - a new job, a car accident, taxing business travel, a friend’s suicide, my fiancé getting diagnosed with cancer (thankfully it wasn’t)…sent my body into a further hole. By tightly managing my stress and diet, I was able to stabilize in my mid-30s enough to enjoy life more and start a family, though conception and pregnancy was anything but easy.
Only after my second pregnancy when my symptoms plummeted to a new low, I happened to see an article about how a common but relatively unknown virus called Epstein Barr (commonly called “mono”) is wreaking havoc on people, especially women, and causing many lifelong symptoms. It was one of those rare moments where your intuition bells go off. I knew almost immediately that this is what I was experiencing. Thankfully my naturopathic doctor was supportive of my hunch and once confirmed and diagnosed, we started managing my symptoms as a viral attack instead of self-sabotaging immune system.
In hindsight it all started with mono at about 16 years old, but I wouldn’t figure that out for 21 more years. I still fight this virus every day. What they call autoimmune, I call super immune.
I believe it is time to bring this illness out of the dark and into the light, sharing knowledge and building a supportive community.
Let’s start the conversation…