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The Challenge of Explaining How I Feel as Someone With CFS/ME

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One of the most frustrating things about living with CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) is that most of the time, I don’t “look” ill, and so people may not understand the fact that there’s anything wrong with me.

CFS/ME falls into the category described as “invisible illnesses,” which I think sums it up very well! Other invisible illnesses include fibromyalgia, lupus and Lyme disease, to name a few.

Living with CFS has made me realize how easy it can be to misjudge people. People may see me and think I look absolutely fine, whereas on the inside I am dealing with a debilitating chronic illness. This can be very frustrating!

My husband also gets frustrated as friends/family will say “Emma looks well” and he’s trying to explain that although I do, I’m actually feeling pretty rubbish — to put it mildly! If you also have CFS/ME or other similar illnesses, you may also know how challenging it can be to explain to people how you feel when they can’t see it. When you have an illness that is so poorly understood, we really do have a challenge on our hands!

When I first got sick, I used to worry about going out of the house in case people thought I was a fraud. However, after a few months of living with CFS/ME I realized I can’t stay cooped up inside forever. See, it’s not like having a short-term illness where you’re off work sick for a week or so. This becomes everyday life. You are living with a chronic illness and you need to try and get out and about when you can (as difficult as it can be sometimes). Obviously there are times when I feel so ill I absolutely can’t leave the house, but for me, on the “better days” I feel better for popping out — even if its just for a short stroll.

Which brings me on to my next point. Just because you see me out having a coffee with a friend (or something along those lines), it doesn’t mean I feel well. For me there is an amount of effort (not to mention planning!) that goes into getting out for that coffee. It can use up a huge amount of energy and I have to make sure I factor in time to rest before and afterwards. Even then I may still feel it for the next day or two. Before I became ill I’d never have thought that going for a coffee could be such a big deal! It would be so nice not to have to think so much about every little activity, but these things really do need careful planning or it’s me that will be in pain.

Please also bear in mind that the times you see me will be on my better days. So I will have made an effort to look OK and may therefore likely look like any healthy person. Very few people will see me on my bad days and during the tough times. Friends will see the Emma out having a chat and a coffee, whereas only my husband will see the Emma who comes home wiped out from it and has to go to bed for the rest of the day.

I met someone else with CFS (she has since become a good friend) one Saturday at a reiki healing clinic, and she said she couldn’t believe I had the condition as I looked so well! At this time she was in the early stages of the illness and felt bad for just being out of the house. It was a “good” day for me, I had managed to wash my hair and I was also wearing makeup. I told her this and she said she didn’t wear makeup as then people wouldn’t believe how ill she was. I explained my own battles with this exact scenario but told her I now wear makeup as it makes me feel better and more positive. If I look in the mirror and I always look ill, that only makes me feel worse.

We had a chat about the difficulties in living with an invisible illness but how it shouldn’t stop us from presenting our best selves to the world. Even when on the inside we may feel pretty awful. So please do bear in mind that next time you see someone with a chronic illness smiling and looking well, that person is likely to be going through more than you might begin to imagine.

Follow this journey on Not Just Tired.

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Thinkstock photo by lorenzoantonucci

Originally published: April 1, 2017
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