The last post found at Invisible Illness Week How Not To Be Offensive, offered advice for people who know someone with an invisible illness such as chronic pain. Now, we’ll look at some things people with an invisible illness can do to increase understanding and improve communication with those close to them.
1. People often don’t understand invisible illnesses; sometimes, as with fibromyalgia, doctors aren’t even sure what the cause is. If you do know the mechanisms of your condition, it may be helpful to talk about it in a way that gives the person you’re talking to a visual. For example, “I have multiple sclerosis” and “I have lesions on my brain” are two statements identical in meaning but different in what they convey. By describing what’s going on in your body, it makes the condition less invisible, at least mentally.
3. You probably have people telling you about alternative treatments all the time, and a lot of their advice probably isn’t very good. One way to show those around that you’re open-minded and appreciative of their good intentions, but also not interested in wild goose chases, is to ask to see research supporting their suggestions. You may also want to ask for a theoretical explanation, one that explains the ways in which the treatment would target specific causes or symptoms of your condition. At best, you end up hearing about something actually promising; at worst, your friend starts to realize they maybe don’t know as much about your condition or medicine in general as he thinks he does.
4. Fill out the “30 things meme,” a meme generated by the founders of Invisible Illness Week to give people with invisible illnesses a format in which to demystify their condition and communicate important things to those around them. The meme is a survey that you fill out with questions about the facts of your condition (official diagnosis, diagnosis date, etc.), about how you feel (what things people say that annoy you, hardest thing to accept, etc.), and questions whose answers serve as helpful pointers to those around you (things you like that people do/say). The survey is meant to be shared on social media sites like Facebook. You can find it at http://invisibleillnessweek.com.