Truly *understanding* chronic illness

“Why are you taking a leave of absence from work?”

[stunned silence]

“The usual stuff, but it’s gotten worse.”

[confused silence]

___________________________________________

I am shocked at how many times I have had this conversation.  To be honest, even one time would be shocking, but I keep having it over and over again.  A few weeks ago I wrote this post about wearing masks so that people won’t see what I’m going through.  It’s something we all do, and we each do it in our own way.  For me, it means letting people know there’s a problem, but not letting them see how bad it really is.  That seems to be backfiring (as these things always do, even though I pretend they won’t.)

A few close family members and friends understand.  I let them see how bad it was, or they saw through my facades.  A few others understand because they’ve gone through similar things.  But most people just don’t get it.  They know I have some “issues” but figure they’re under control.  I seemed ok, except for occasionally having to cancel plans or not being able to drive too far in a day, and those are minor, right?  So why should I need to take time off from work?  I hate to spoil the illusion, but it’s time.

I keep seeing statistics about how many people live with chronic pain, how many have arthritis, how many have autoimmune diseases. These number make for catchy headlines and memorable soundbites, but where’s the education?  Maybe the problem is that we’re all wearing masks.  We need to make our family and friends understand our illnesses, so that they can make their people understand it, so that maybe society will start to get it.  The ignorance is so frustrating.  Yes, I wear masks, but even when I do show people what’s going on, a few weeks later I seem ok, and they forget all about it.  I need them, we all need them, to understand.

If any of this sounds familiar, if you can relate, please share it on Facebook and/or Twitter.  This blog is new, and it would be great to share it.

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2 Responses to Truly *understanding* chronic illness

  1. mezzak says:

    This rings so true to my own experience. The mask of looking well, the mask of coping which work until they don’t and then they reveal that the masks were so we could manage these shifting boundaries of our self and the world. They also reinforce the choice others make to engage only a superficial level. I know I had a feeling once that my manager would rather I be depressed with a diagnosis and pills to take than acknowledge the backwards, forwards, sideways and can’t function at all today of a chronic autoimmune condition for which there is no cure.

    • chronicrants says:

      I think you’re right. People assume that “sick” means you take a medication and everything is fine. They don’t understand that some illnesses aren’t curable and aren’t predictable. Good luck with your manager!

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