I’m Coming Out!

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.

In 2009 I was bed-bound for most of the year. If I left the house, it was in a wheelchair.

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:

“It is only with the heart that one can see rightly; what is essential is invisible to the eye.”
Antoine de Saint-Exupéry, The Little Prince

 

4 Comments

  1. I’m excited to see your video recipes!

    • hi dorian! i’m so glad you wrote! this site isn’t “live” to anyone else yet, and i thought it was a mistake that someone wrote a comment! stay tuned. first video airs 11/28!

  2. Being Authentic, is so challenging, but also one of the most rewarding things we can do for ourselves, and for others. Thank you.

    “It seems to me that being authentic is being brave enough or just candid enough to be honest about what you are experiencing or who you are, whether it is popular are not. A person gives a gift to other people when they say, This is what happened to me or this is how I truly feel, no matter what the popular belief is about what I should feel. Whenever you are honest, you are speaking for a thousand silent people who don’t have the voice to say what they really feel or are really experiencing. So, if you ever talk about [the thing you went through], you will touch a million hearts. Because you are speaking for more than just yourself. You are never alone in what you are feeling.”
    [The above is an email from someone else's mom, posted of all places, to one of the design blogs i read]

  3. wow vanessa, wow. i’m speechless. thank you so much for sharing that. i couldn’t agree more. that’s what “real” is all about. authenticity. my health crisis is part of what lead to this project. i learned so much about food, and its medicinal affects on the body. i want to share both my story and my food with people in the hopes that they’ll feel inspired, hopeful, and less alone. thank you for supporting me in such a profound way. i’m blessed. xo

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