Welcome to the first AutoimmunePatient article participating in WEGO Health Activist Writer’s Month Challenge. The concept is that an amazing group of health writers from around the world receive daily prompts, and will write about them to promote awareness of personal stories and of diseases in general.
April 1st, 2013: Why do I write?
If you had told me five years ago that today I would be blogging, writing about my disease, and sharing the information I’ve gathered and my personal journey, I’d have broken into hysterical laughter.
From the time I was diagnosed up until mid-2012, my autoimmune diseases (narcolpesy, Hashimoto’s thyroiditis, and lichen planus) and prior history with bipolar disorder, depression and anxiety were things I would have taken to the grave with me. I shared as minimal information as I could, not only including bosses and teachers, but even family and close friends. No one knew the struggles I faced on a day-to-day basis.
In 2012, I went to my first narcolepsy patient conference (Narcolepsy Network). It was the first time I had ever met any other narcoleptic before. After meeting so many people like me, I knew then that I had to get out there, and share my story of not only disease, but also the recovery I had achieved (in short, I am able to put my narcolepsy into “remission” if I do not eat gluten). If my story could help connect with, inspire, or change another young adults life, outing myself to the world was worth it.
Two months after starting AutoimmunePatient, I received my first real “anonymous” feedback. J wrote:
“3 months ago… I was diagnosed with narcolepsy without cataplexy. After a year of increasingly acute fatigue, I got to the point where I could not function anymore… after 4 days of cutting all gluten out, I immediately started to feel more energetic. 2 weeks after the diet, I feel like a whole new person, ready to continue with my studies and pursue all the goals which I previously wanted to…Why is the link between diet and reducing narcoleptic symptoms not mainstream? “
That was it, another narcoleptic that had undergone the same journey I did, reclaimed functioning by a simple gluten free diet, and not many people were out there talking about it (much less doctors approving or recommending it!)
I knew then that I needed to be talking about it. Even if only from a personal standpoint.
Comments kept coming in; mostly they were narcoleptics, but some from people with Hashimoto’s or another thyroid diseases, some with funny skin diseases like mine, others who found there way there by way of just the “paleo” diet.
Then, I got an e-mail that made me sure I’d keep up my website and keep telling my story forever. A comment came from “C” about her daughter who had been diagnosed with narcolepsy at age 6 (current age 16); after years of struggling with diagnoses and medications, relief from her daughters narcolepsy never came until gluten was removed from her diet. She writes:
Within 6 weeks [of removing gluten from her diet] my daughter was noticeably more alert, her previous ‘drowsy-droopy eyed’ look was completely gone. Within 5 months she back to running around and lost 20 lbs, she was quite ‘herself’ again. She was sleeping soundly and completely through the night. When we returned to her Sleep disorder MD for her 6 month follow-up, she was quite shocked and also very pleased with the obvious change in my daughter. My daughter is now a very active high school sophomore, an excellent student, a cheerleader, a dancer, a pianist, yet most importantly a delightful young lady with a beautiful spirit. She has self-regulated her gluten diet and we have become quite accomplished at mastering gluten free menus! Please keep getting the word out to those struggling with narcolepsy. Removing gluten from her diet completely changed the impact narcolepsy has on my daughter and completely changed the quality of my daughter’s life! Thank you!
And that was all it took. Another young girl whose life had changed, doing what I was doing. I knew then I had to get the word out, that my story was more than just an “n of 1”, and the more that read it, the more might follow (and feel better!)
Since the initial posts and comments, I have been blessed to interact with a group of narcoleptics who also follow a gluten free diet like me, and through our shared experiences, strength, and hope, continue to fight our disease(s) one day at a time.
When I was first diagnosed, I was brutally alone. Now, I don’t have to face it by myself. And, if my blog helps even one person get out of bed and go to school or work in the morning; it’s all worth it.