The answer is definitely not the level of our tennis games! The answer is that we both have autoimmune diseases. Venus Williams gave a delightful interview on Morning Joe today. She has been playing tennis since she was four and her inner fashionista probably started developing around the same time!
As a person who had a eight year journey of misery to be diagnosed with celiac disease, I was surprised to learn that it took seven years for Venus to receive a diagnosis for Sjogren’s Disease. And, like me, it took getting very sick before doctors finally connected the dots to diagnose the problem.
Like me, Venus said a diagnosis was a relief because knowing what is wrong helps you address it and start on a path back to health. With an autoimmune disease, you have to accept your symptoms, your body and your treatment.
Venus has addressed some of her issues through her diet. I addressed all of my health issues with a dietary change. She called herself a “chee-gan,” which stands for a cheating vegan. I can’t cheat, the results of eating gluten are so unpleasant.
I starting thinking about how the long length of diagnosis of an autoimmune disease might be a common thread across the spectrum of autoimmune diseases. This leads me to believe that we do not have enough physicians who study autoimmune diseases as an entire class of medicine or who become autoimmunity experts. We have experts in each disease, much like we have doctors for each body part.
Our overall system is not built in such a way to address the whole person, but there are rare systems like the Cleveland Clinic which offer a more holistic approach. The journey from internist or pediatrician to body part doctor to disease specialist doctor to psychiatrist if you are a woman because you are often told it is in your head, is challenging and expensive. But, it also takes a long time and that doesn’t help over all health.
Our pediatricians and internists aren’t thinking about autoimmune diseases when sick patients present with a myriad of symptoms or conversely, with a couple of severe symptoms. I presented with terrible anemia during pregnancy and dangerously premature deliveries, should my gynecologist have recognized these as celiac disease? Maybe if celiac disease had been more than one paragraph in a medical book next to a picture of a child with a bloated belly and wasted limbs, he might have ordered a blood test after I turned up anemic in the first trimester.
But, I was anemic in my early twenties and was told my horrible fatigue was all in my head by my internist. Venus said she just didn’t feel right. I said the same thing to my doctors. I trudged from that internist to a gastroenterologist to a new internist to a new gastroenterologist to a new gynecologist over the course of those eight years. No one ever said, “maybe we should test you for celiac disease.”
Two things would make me happy. The first is that autoimmune diseases should be addressed thoroughly in the education of our medical professionals. Just knowing about the diseases and the interconnectedness of autoimmune issues would be a huge start. Understanding by medical professionals that if something is “off” with the patient or they present with lots of uncomfortable symptoms, the immune system might be having a break down.
The second is that nutrition and food choices should be explored as part of our problem and part of our solution in the education of our medical professionals. There is a reason why autoimmune issues and food allergies are skyrocketing. What we put into our bodies has a huge affect on our health and wellness, food is a part of the problem and can be the solution.
Having an articulate, talented and beautiful woman like Venus Williams speak out about her autoimmune challenges is wonderful for awareness, hopefully none of her doctors told her that it was all in her head.