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When I Felt My Chronic Fatigue Syndrome Symptoms While on Family Vacation

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Let’s be real. I have chronic fatigue syndrome (CFS). It’s the label I have been given after months of medical tests. For now, some days are good, some days are OK and some days are damn hard.

On the hard days, all I want to do it curl up and shut the world out. I can’t do anything. I can’t function. I don’t even know what’s wrong. I just can’t do life. And what makes it worse is trying to be OK. Trying to act OK. Because all the world sees is a pathetic mess. Miserable. Grumpy. Selfish. Irritable. Lazy. Weak.

Well, today is one of those days. And I am on holiday. In a beautiful place. With my beautiful family. I should be happy and energized and enjoying every moment. But no amount of positive thought, or gratitude for all that I have, or meditation or green smoothies can clear my foggy head. Or lift the hood from over my eyes. Or remove the invisible, heavy backpack I feel like I’m lugging around. Or shift the guilt-induced lump in my throat (I’m ruining everyone’s holiday, not just my own). I feel imprisoned in a body I have no control over.

Yesterday was wonderful. Life was amazing. We laughed. We ate delicious food. We lapped up the beautiful scenery. Today is like I’m a different person. In a different body. I want to close my eyes and shut out everyone and everything. But I want to enjoy my holiday and not ruin the day for my family.

So I’ll try. I’ll fake a smile. Swallow the lump and try not to snap. I’ll force some food into my nauseated stomach. Because the last few months of living with this illness has taught me how much worse I will feel if I don’t eat. So I’ll roll the dice and see what hand my digestive system wants to deal me today. I’ll wait for the unpredictable response of my body. Will it be normal digestion, a cascade of insatiable hunger, hours of indigestion, stomach cramps or more nausea? There is no way of predicting — just wait and see — and carry on with the day. Then try again tomorrow.

I know I’m not alone. I know many people face challenges with “invisible illnesses” like this. But I also know a lot of people don’t know how this feels. (For your information, “You don’t look ill” may be meant as a compliment, but it really doesn’t help, especially on days like this!)

So if you can relate to this, then know you’re not alone. And if you can’t, then maybe you can look at that “miserable, lazy, grumpy, snappish, irritable” person slightly differently. Believe me, I don’t want to feel like this. I’m trying not to be like this, as I’m sure everyone else is.

You never know what’s going on in someone else’s world, body or head by the way they look on the outside. So a little less judgment, a little more compassion and the world is a happier place. We are all in this together!

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

Originally published: July 9, 2016
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