How to Make Discussing a Chronic Illness Less Awkward
As a teenager with a chronic condition, I have been faced with many awkward situations relating to being ill — people who don’t know where to look when they see you in a wheelchair for the first time, people who revert to seeing you as a baby once you become ill, and many more. I never blame anyone in these situations; how can they be expected to know the socially acceptable reaction to every situation? It is a learning opportunity for everyone. I’m still adapting to my new normal and so is everyone around me. As my normal continues to change, the people around me continue to adapt. I must say some are quicker to adapt then others, but I have yet to come across someone who isn’t trying their best, whatever their best may be.
One way, I find, of helping to take some of the awkwardness out of these situations, especially with people my own age, is to be open about what is happening to me. For example, if I have a new piece of medical equipment attached to me, I will explain briefly what it is and make sure my friends know that is isn’t anything to be afraid of. While I find this important, since it stops people from being so nervous around me, I am sometimes scared to mention it (‘it’ being anything to do with being ill). I don’t like talking about it— not because I don’t want to talk about it, but because I don’t want people to see me as someone who always talks about being ill. Having a chronic condition has taken over so much of my life that I don’t want it to invade the friendships I have managed to maintain.
The one time I talk openly about what is actually going on is when I am asked. When someone asks me a question about my condition, no matter how trivial the question may be, I could cry with happiness. Someone genuinely taking an interest, wanting to know something, it really means a lot.
I only noticed recently that some of my closest friends really didn’t understand why I couldn’t do certain things. I had never explained because these things happened so gradually that it never occurred to me that someone wouldn’t just know (it had become so normal in my life). About a month ago, we were sitting in a group, chatting, and for the first time, one of the girls asked me why I had to go into hospital so frequently. I answered, and as the conversation went on I realized how much I never explained, so I filled in the blanks for them. I think everyone was happy to have it all explained.
Now I’m not saying that explaining your entire medical history to everyone you meet is a good idea. But, it might be good to take a minute, every now and then, to see if those closest to you have any questions about your condition. Let them know it’s okay to ask questions. It doesn’t need to be awkward!
The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
She is nineteen and was diagnosed with Ehlers Danlos Syndrome and Dysautonomia four years ago. She is determined to find a way around any challenge put in front of her by her conditions.
jordan-e