Skip to main content

Need to know? Or not

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.
Post a Comment

Popular posts from this blog

Signs the pain is getting the best of you

100 Symptoms of Fibromyalgia

There was a site that had this and I had linked to it on Tumblr but it is gone. So I had to hunt down someone who found my post and posted the whole thing in a forum. Anyway it is around but I'm posting it here so I will not have to hunt it down to reference it. Now we all know the major symptoms are the wide-spread pain, but our pain isn't just muscle pain... it can be nerve types of pain as well, and the fatigue and the insomnia. And even among symptoms there are some far more frequent than others, but it should be said we have categories... like the cognitive dysfunction, which is a broad one that has more than one symptom and we often just say fibrofog. The insomnia... more than one sleeping disorder. So the list is interesting.




GENERAL
__ Fatigue, made worse by physical exertion or stress
__ Activity level decreased to less than 50% of pre-illness activity level
__ Recurrent flu-like illness
__ Sore throat
__ Hoarseness
__ Tender or swollen lymph nodes (glands), especiall…

When I say I am good

When people ask me how I am feeling 99% of the time I am lying. I often say 'not bad', because I feel it is slightly more honest than 'good' or 'fine'. Got sick of fine. Anyway, I lie for many reasons. 



I'm having a good pain day: They happen and I'll say that I'm good, fine, not bad. I even feel like I can accomplish great things... in moderation. In which case, relatively speaking, for Me I am not actually lying. This is a Good pain day, it is Not Bad for me and I am Fine with it. I just don't want to explain: I just don't want to explain how crappy I feel and in which way I mean. Because I am tired of it. I just want to deal with it, without having to discuss it, mention it or have any sympathy expressed about it. Because it can be complicated. It may be a migraine with specific symptoms. Maybe it is a FM flare though. Or both. And then I have to explain what it is because most people think my migraines are the main issue but I could be FM…