During Dysautonomia Awareness month, someone asked me how the awareness month helps me personally. This person wasn’t being snarky or belittling. He just wanted to know what the purpose is. I understand his line of thinking. Sharing a Facebook post will not make me feel better; wearing a tshirt that supports awareness will not pay my medical bills. When faced with the reality of a chronic condition, all the tshirts, Facebook statuses, and Instagram graphics in the world seem inadequate.
However, for many of my chronic illness friends (including myself), awareness is our hope and life line. We’re met daily with not only the challenges of our condition- but also the lack of understanding of others. Don’t get me wrong. I don’t believe the whole world has ganged up on me. Not at all, most people are quite lovely. However, due to the lack of understanding of my condition, I find myself in situations often where a little awareness would go a long way.
Awareness month matters to educate medical professionals.
Remember, Dr. Deficient? ( This guy ) I’m fairly confident that he reads online news, uses social media, or has idle conversation with people while standing in line at the movies. Why? Because, even if he wasn’t a very understanding doctor for me, I’m assuming he is a human who engages in human activities. What if in the days before I went into his office he had seen several infographics about my disorder? What if he saw an Ehlers Danlos awareness tshirt while he was standing in line? Of course, it’s entirely possible he wouldn’t have noticed or cared, but there is also the chance that could have been a game changer for my medical care.
Awareness month matters to educate friends and family.
I realize I talk a lot about my illness on my blog- because my blog was created to support others who are dealing with the crazy, chronic life as well. In day to day communication, it doesn’t always come up. (Trust me. I’m awkward enough without greeting people by saying, “Hello. I have a rare disease that makes me fall apart sometimes!”) My friends and family learn about my illness through the information I share. How does that help? What if I’m out with a friend and faint or dislocate a hip? He/She will be more likely to know what is happening if they have a basic understanding of my illness.
Awareness month matters to the undiagnosed.
I was diagnosed with Ehlers Danlos Syndrome two days before my 30th birthday. Up until that day, I truly believed that I was less resilient than the general public. I had no clue why I had to fight tears when I walk down stairs, and other people can handle it. I thought I was immature as a young child when writing made my hands cramp until I cried, and no other students my age were crying. I had no idea there was a name for my struggle. I believed ugly words like weak and lazy, because I didn’t have a diagnosis to explain how I felt.
My mom recently shared a post about Ehlers Danlos Syndrome on her own social media. I was touched that she took time to do that. When I asked her about it she said, “I thought of all those years when we didn’t have answers for what was wrong with you, and I knew how much I would have appreciated someone sharing this information with us. Maybe it’ll help someone else.” Good words, Momma. So true.
May marks the awareness month for many conditions. (I’ll be honest. I’m afraid to try listing them, because I know I’ll leave someone out.) If it’s your month, let me encourage you to share information, encouragement, fund raisers, and anything else that you think needs to be said. This is your time of the year to attract attention for your struggle. Make some noise! Spread the word! Your awareness month matters!
Peace, love, and health, friends.