Today is Day 7 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge). The prompt today is:
Was starting your advocacy journey a hard decision? Were you anxious and hesitant or were you excited and ready to share your story? Tell us how you chose to start advocating for your condition.
The start of my advocacy journey for Meniere’s Disease and other chronic illnesses is kind of a long story. First I found out I am allergic to wheat and suspected to have celiac disease. Here, let me ‘splain….I had been generally sick for a long time when I found out I’m allergic to wheat, so I stopped eating wheat. I started to feel a whole lot better, but I was still getting sick sporadically, so I decided to stop eating gluten. My doctor then suspected that I may have celiac disease. I was given the blood test but tested negative, I was given it again and tested positive. This provided no definitive results, so I would need a biopsy from my small intestines. However, the only way for this test to work was for me to start eating gluten again for a month or two. I asked what the treatment was if I was found to have celiac disease and it was a gluten free diet. Well I was already eating that way, so I decided to just keep on a gluten free diet instead of having the test. Maybe I’ll have it one day, but probably not. The doctors are pretty sure I have it due to the last blood test, I don’t really care, I know I can’t eat gluten.
This was before there was a lot of knowledge about a gluten free life style and celiac disease, so I became an advocate. I started a blog and worked hard to bring awareness. I worked with local groups. I was a taste tester for Whole Foods Gluten Free Bake House. It was an exciting time for me, I felt like I was making a difference. Then my Meniere’s Disease got so much worse.
When the Meniere’s Disease went bilateral, meaning I suddenly had it in both ears instead of one, I had to rethink my life. (if you don’t know about Meniere’s Disease, and you’d like to, please see Meniere’s Disease-My Story at the top of the page.) Once I saw my new doctor at Duke Medical Center I had renewed hope (more than I should have really). I was going to focus on getting healthier. I wanted to increase my exercise and start eating even healthier. I decided to stop writing my gluten free blog and start a blog all about me getting as healthy as possible with Meniere’s Disease and (suspected) celiac disease. This blog was called 365 Days to a Healthier Me.
I soon discovered I was not going to be able to focus as much on getting healthier as I was on simply getting through the day. The vertigo was happening almost daily and I was losing my hearing rapidly. I decided to start writing about my experiences with Meniere’s Disease (I stopped writing about a gluten free lifestyle by then) and this naturally morphed into advocacy. I found others were out there who were struggling as I was and needed some support. Soon I started talking about other illnesses I struggle with on a daily basis, such as chronic migraines and bipolar disorder. I have found that people with chronic illnesses need a voice. I hope I can add a little voice to a lot of other voices.
After the loss of my hearing and with continued struggles with vertigo I haven’t been able to advocate in person, but I continue to try to keep up the good fight via the internet. Sometimes I’m not able to do as much as I’d like due to my illnesses, but I’ll keep trying. That’s all we can do. Keep trying.
If you would like to share your story on Picnic with Ants, contact me through the contact form on my About Me – Contact Me Page.
*All images on this site and the creation of Wendy Holcombe unless otherwise noted.