You guys, I’m getting kind of cranky. It’s Invisible Illness Awareness Week, and this year’s theme is supposed to be “Share Your Visible Hope.”
I’ve been checking out lots of other blogs, and I’m not seeing a whole lot of hope happening. What I am seeing is a lot of complaining about how much others don’t get it, and how hard it is to live with an invisible illness.
Don’t get me wrong, it is hard. I’m all for keeping it real. I’ve blogged about the sucky things about living with my disease. One of those things is even that I find it difficult to explain all the facets of my disease to others. But I am hearing sentiments within the health activist community that are starting to ruffle my feathers. People saying they wish they had a disease that others could see, because then everyone would obviously understand.
I disagree. Sure, when I see someone in a wheelchair, I know it might be nice for me to grab the door for them. But I don’t know their story, why they’re in a wheelchair, whether or not they’re sick, or really anything else about them… unless I ask. The same goes with any visible disease/illness/ailment. I am sure that people with illness that can easily be seen often wish they could live without stares and questions. This week is not supposed to be about who has it worse. It’s supposed to be about hope.
I am grateful that my illness is invisible.
When I was diagnosed with IBD as a college sophomore, I didn’t want to talk about it. Nobody could see it, so I could choose with whom I wanted to share my story. To this day, I can decide who I want to let in, and how much I want to let them in. I choose to be an activist and talk non-stop about my bowels. I also firmly believe it’s okay if you don’t want to do that and would rather keep it to yourself.
When your illness is invisible, you get that choice.
I’m happy that I had time to get used to my disease, mull around with my story in my head, and gather my thoughts before I shared it with everyone. It took me a while to become comfortable, and I’m not sure I’d be so “loud and proud” today without that time.
Is it annoying when people tell me I don’t look sick? Sometimes, but I choose to take it as a compliment. Heck yes, I look pulled together!
Do I sometimes hate justifying my decisions to stay home on a Friday night, missing important events, and calling in sick to work? Yes, but I can also use these as opportunities to educate others.
Looking for some perspective? Check out this post that I keep bookmarked and re-read often: And That’s How You Ninja Kick Lupus in the Ass and Take Back Your Life.
Tell me a cruddy/annoying/less-than-ideal situation that has taught you something important. How has your life been changed for the better through bad situations?