So here goes… I know what it’s like to be on the other side. I know what it’s like to have a close family member have myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and not understand what they’re going through.
My older sister became ill with ME/CFS two years before I did and, I’m ashamed to say, I did not give her the support she needed.
Don’t get me wrong, it’s not that I didn’t care. I did. However, I guess I was too busy leading my own healthy life without trying to fully understand her situation. I did try to help, of course, but never in the best way. Every time we spoke on the phone I would somehow end up saying the wrong thing and upsetting her. When I visited, I took her flowers but didn’t think to cut the ends and put them in a vase for her. I’m sure they were more hassle than they were worth. I didn’t think to bring her meals, do some cleaning, anything that would have made her life a little easier.
My advice for people with ME/CFS? Communicate. When you become ill, it can seem, from an outsider’s point of view, that you have just become extremely withdrawn and down (remember, I’ve been on both sides!).
So here’s what I advise: Explain your symptoms. Explain how the illness fluctuates. Explain how if you can do something one day, it doesn’t mean that you can do it every time. Explain that, in fact, if you do something one day, it more than likely means that you’ll feel a lot worse the following few days. And, always a winner, describe your daily routine. When people realize that you have to rest before and after you brush your teeth/take a shower/do the laundry, any “I get really tired, too” comments will probably fly out of the window. And remind your listener that you suffer 24/7 and never get any respite, so apologies if you’re occasionally down in the dumps but, seriously, you deserve a medal, no make that a trophy (a massive one inscribed with the words “Woohoo, you’re amazing!”), for getting through each day.
I know communicating is easier said than done for many of you (me included) but I recommend doing it in whatever way you can. If you can’t talk to people, then send the occasional text or email. Or, if you have a caregiver, you could ask them to fully explain your situation to friends and family. Alternatively, encourage people to look at a relevant website; Action for ME provides a wealth of information on the illness.
My advice is to give people time. OK, so there will be some who just never get it. If their attitude or comments are really hurtful, let them go. But there will be others who also don’t really manage to get it but still mean the best. Remember that they are not horrible people, their comments are well-intended and they still care for you. After all, we ourselves have enough problems understanding the illness, so it’s understandable that it’s even more confusing for those around us.
I was fortunate that my sister forgave my ignorance. When I, myself, fell into this bewildering black hole, she was on hand to provide support and guidance as I floundered around in the dark. Although being chronically ill is obviously far from what we want, there’s no denying that we have become closer because of it. And when I was finally able to have a tiny wedding ceremony to marry my long-term fiancé, my sister, as maid of honor, was right by my side.
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