There seems to be an increasing pressure that somehow, by being sick, we all have an inherent responsibility to educate people about our illnesses and raise awareness whenever and wherever possible. I‘ve been aware of it for some months, but recently, it seems to have resurfaced along with a great deal more discussion in various online groups to which I belong. While there may be many reasons for this, in Australia, a lot of the motivation for increased advocacy and education about illness and disability seems to be happening because, I think, there are far fewer institutionalized awareness programs. The national days/months for various illnesses come out of the U.S., and I’m seeing more people posting and using the colored ribbons that are part of those campaigns. Our own organizations exist as umbrellas for research and different resources pertaining to different diseases and conditions, but not so much for awareness campaigns. (Creaky Joints.)
I liked this blog post because while I love to advocate and talk about my illness on my blog and my Page and when I write articles or do work with Migraine Misfits… the fact is in real life I feel we have the right to disclose as much or as little as we want.
As a very private and reserved person I don’t feel like educating everyone I meet about something I consider to be private unless:
a) They want to know. They genuinely want to know something about my specific health condition and then yes, I will give them the details they want. Because people often are uncomfortable around illness and sometimes knowledge makes them more at ease. They can grasp it better.
b) Someone says something that is false about my illness specifically to me or about me. Misinformation can lead to some myths and stigmas so I correct that information. Some might be a that a migraine lasts a day, not up to 72 hours. Or that someone can’t have a migraine every day, and I will explain chronic migraines. This is my choice though. And it is people who Know already. Generally, they are few and far between.
c) I inform my employer because it will affect my work. I know disclosure to an employer is a very difficult topic. In my case, I disclose if it will affect my work and I don’t when it won’t.
However, no, to random strangers I am not getting all up in their business about my illness. It is need to know. And they do not need to know.
Frankly, I don’t feel that my illness is anyone else’s business except my own. To be honest, I find the grind of day to day living with RA quite tedious most of the time. It’s BORING being sick. REALLY boring. It interferes with my life in all sorts of ways, and makes keeping up with the things that really interest me (RA doesn’t – I’ve learned about that because I had no choice!) more challenging than I’d like a lot of the time. If it bores me, it stands to reason that me banging on about it at every opportunity that presents itself could well bore a whole lot of other people too. Why set out to do that?!
It is true walking around telling everyone with an ear about our illness would get frustrating fast for you and the person themselves. I have learned a long time ago people do not want to hear about this sort of thing.
There are times for revealing. There are times for concealing. You are the one who chooses when it is appropriate to reveal and when it is appropriate to conceal. And then if you want you can get a blog and explain the real existence to those who are interested… sometimes writing it down is a good experience.