We’re a funny bunch, us ACHDers/GUCHs (Grown Ups with Congenital Heart Disease)—we live in a world that can be very different from the world that others experience.
I’ve tried explaining this a couple of times, at conferences or at work—to give my colleagues some insight in to what come across as being inconsistent, moody, temperamental. Some of them get it, some not so much—so what do you think?
The downs of being a GUCH and involved in a charity, campaigning group or peer support group may be evident, but are worth running through. The worst case is people we care for die, and the more we know and care for, the more die. If you pause before wishing someone a happy birthday on Facebook… then you know what I mean. Below worst case there’s the emergency trips to hospital, the surgeries, the tests, the fear for our friends and that some of this could happen to ourselves.
Yes, we do fear that some of this could happen to ourselves, and also we can feel guilty that it doesn’t. Is it any wonder some of us decide that it’s all too much and don’t get involved in groups?
There must be balance so that the dark is put into sharp relief by the light—the tests that come back positive (or at least neutral), the successful surgeries that mean people can do things they want to, the hope for our friends, and the knowledge that if it does happen to us we’ve got support. Then comes the rest, like the friendships over thousands of miles, the celebrations of milestones we never thought we’d make, and the achievement of “normal”—be that the child we never thought we’d have, the degree we were told not to study for, or the job we didn’t think we’d get.
However, when dark and light are in such contrast, the middle ground—the grey of just living—can be overtaken from both sides. The downs can be deeper than anyone else’s, and the highs higher. This can give our non-ACHD friends a few problems in understanding us. In my experience, some prefer not to know about this part of our lives, others accept it, and the good ones know that it’s part of what makes us, us.
The middle ground is where people recharge their batteries, when life can go on auto-pilot for a bit where there are a limited number of ups and downs. If we don’t find some patch of grey in our lives then we can burn out, focus utterly on the extremes and forget that the grey is just as important. We can also burn our friends out, as they try and work out how to be friends with someone oscillating as widely as we can do. We also need to remember they have their own extremes, dark and light—and they will match ours in intensity if not frequency, though some will match us high for high and low for low.
So, my friends, my challenge to you—and to me—is go find the middle ground…
Add yours below.
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