This past fall, a short piece I wrote about living and competing with a chronic illness was featured in the My Story section of USA Triathlon's weekly Multisport Zone e-newsletter. After the article ran, USAT and I received dozens and dozens of letters from athletes looking for advice on how to get medical treatment for rare diseases and how to continue racing and training despite illness.
I wanted to share the steps I've taken to get healthy enough to train, as well as tips and tricks I've learned to make training with a chronic illness a little easier.
Understand Your Disease
When I was first diagnosed with Familial Mediterranean Fever, I had very few resources. I was the first case of FMF that my doctors had ever seen and treated. Not surprisingly, my initial treatment did not work well. After one particularly bad stay in the hospital, I was determined to find a solution. After being discharged, I drove straight to the University of Arizona's medical school library and promised myself I wouldn't leave until I understood my disease and could determine a better treatment. It was then that I found the drug trial at the National Institute of Health.
Leverage Your Resources
Use Wikipedia, Google and PubMed to find all the articles and look up words that are unfamiliar. Call on friends, family or coworkers who have science backgrounds and ask them to help you understand your disease. Knowledge is power. Understanding your disease on the most basic, molecular level can lead to an understanding of treatments.
Use Knowledge to Get an Edge
With all the information gained during research, consider if there are any environmental factors--things you can control in your surroundings--that may improve your health. In essence, FMF causes an unregulated inflammatory system. I spent months researching and removing anything pro-inflammatory from my environment. I only use organic cleaning products, lotions without parabens or anything artificial (Whole Foods 365 line is great) and I cut out all inflammatory foods--including coffee, white flour and nightshade vegetables.
Your Illness is a Job, Treat it Accordingly
If your experience is anything like mine, it most likely will be just like a job. At times, I was spending up to 15 hours a week at doctor's appointments, making calls and gathering records. Get organized: gather all your medical records according to date of treatment and provide a short summary of why each record is relevant to each provider. Ensure that every time you see a new provider, they have a copy of all of your records. Keep a matrix of your health. This should include any relevant symptoms (fever for me), how you feel each day, your diet each day and anything else relevant to your illness.