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When the Going Gets Tough for the Chronically Ill

Posted Mar 26 2013 11:31am
We all know the saying
When the going gets tough, the tough get going.
But when you live with chronic illness, I think a more fitting revision might be
When the going gets tougher, the tough disappear.
At least that's how it seems to me, especially when I look back at my own blog archive from the last year.  When I started Hepatitis C treatment in February 2012, things got really tough.  So I compensated by temporarily letting go of a lot of the things I love doing, like blogging and container gardening, to focus on my health.

Thing is, I've noticed that this happens to my chronically awesome friends too.  I visited the blogs of a few sick friends the other day and saw that they too have been absent.  From the few posts one friend was able to publish, I learned that her life is undergoing several major upheavals all at once.  I saw that she is posting as often as she can.  As much as I want her to keep sharing her story, I know her capacity to deal with life right now is overtaxed and her blogging must take a back seat.

The truth is, when you live with chronic illness, you lose your ability to do a lot of things.  Heck, there are days when I can't properly focus on getting just one thing done!  I often think doing is for healthy people.  Some days just being is all I have the energy to do.

But those of us living with chronic illness already get this.  So why am I writing this post?  Because I'm sad that our voices seem to fade out when things get really bad for us.  Our stories stop being told at the exact moment when the need to talk scream about what is happening is so much greater.  Which makes me frustrated, because when we get quiet, it seems like the healthy people in our lives don't notice that we are getting swallowed up by our tough health battles and could really use their help.

Call me cynical, but the only help I see us sick friends getting is that weekly reminder to church-goers to pray for the sick and elderly. (They still do that, right?) The rest of society is geared towards the able-bodied, so we aren't getting much help there, are we?

But we need much more than prayers.  Our lives are so much better when 1) we have healthy friends and family sharing positive interactions with us on a regular basis and 2) those folks can offer us some support and assistance, or arrange for it, when we really need it.  Unfortunately, too many of us don't have these positive interactions with healthy friends and family.  Even when we are surrounded by healthy people, those folks sometimes chose to tune us out instead of help us out.

We know that the fundamental truth is that it's hard to be sick. And we are faced with another fundamental truth: it's hard for healthy people to truly comprehend what it means to be sick and sometimes it's even hard for healthy people to just be around sick people.

Here is a quote I think pretty much sums up this problem
People think they know you. They think they know how you’re handling a situation. But the truth is no one knows. No one knows what happens after you leave them, when you’re lying in bed or sitting over your breakfast alone and all you want to do is cry or scream. They don’t know what’s going on inside your head—the mind-numbing cocktail of anger and sadness and guilt. This isn’t their fault. They just don’t know. And so they pretend and they say you’re doing great when you’re really not. And this makes everyone feel better. Everybody but you.
~ William H. Woodwell Jr.

Now I feel bad that I have taken up so much of your time eloquently defining this issue when I don't have a solution to it, at least not yet.  But then again, perhaps the solution comes when we all start talking more about this, rather than letting healthy people go on assuming those of us living with chronic illness are "doing great."  Because let's be really, really honest--even on our "good" days, we aren't anywhere near to "doing great."

My goal is to live life "as well as possible" each and every day I live with chronic illness.

How does chronic illness impair your ability to tell your story? When health battles overwhelm you, do you get the support you need from the healthy people in your life?  What are your ideas on bridging the gap between ourselves and healthy people?
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