For years I’ve kept a low profile on Facebook and other social networking platforms.
I’ve been keeping a secret. It’s time for me to come forward with that secret now.
I’m officially coming out as a person who lives with a chronic disease. If I tell you the name of it now, you’ll run away from this site to look it up on Wikipedia. I’d like one more minute of your reading time. When you do search for it, add Phoenix Rising to one of your searches.
Much of the “official” information out there is either incorrect, partially complete, or lacking nuance. One of the reasons that I kept myself so “hidden” for so long was because of the myths and misunderstanding that surround the disease. I didn’t have the emotional energy to deal with this misunderstanding on top of the physical pain and discomfort that my body was suffering.
In the interests of keeping it real I have to be open and honest about my experience with the disease and the myriad of ways that it has affected my life, and continues to affect it. My diagnosis is ME/CFS–or Myalgic Encephalomyelitis (say that ten times fast) Chronic Fatigue Syndrome. What my disease is exactly, I’m not sure. Nor does anyone else for that matter. It’s something that for the first time in more than two decades, researchers and doctors are taking more seriously than ever before.
Without this, there’d be a huge piece missing from your understanding of why I’m so passionate about food, why I urge all of you to take your diets more seriously, and why I now have the ability to launch such a project. I’ll say upfront that a gluten-lactose-sugar free diet DID NOT cure my CFS, or give me the functionality that I now enjoy after being bed-ridden for almost a year. It DID help relieve some of my symptoms, and remove some of the stress on my body that wasn’t helping my already overtaxed immune system. Since there are so many things about the illness that I can’t control, I’ve taken the reigns on the things I can.
The disease affects every aspect of my life. There is so much to say about it, but for now, I’ll leave you with one of my favorite quotes: