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The Biggest Struggle of Having Chronic Fatigue Syndrome

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I never really knew what lonely was until I was diagnosed and suffered from chronic fatigue syndrome (CFS).

I have being walking this road for nearly two years now and man, sometimes I wish to say it got easier.

Naturally I’m a people person. I love people and I spend most of my energy and time caring, loving and encouraging others. Currently one of my biggest struggles has being maintaining relationships with others. Knowing who to trust, and who to be vulnerable with without fear of judgement is challenging. What turned into a life full of energy, friendship, connection, belonging with others, turned into a lonely, isolated, tiring life with my chronic illness.

One of the biggest struggles I’ve found as of late is with other people struggling with CFS, or other similar chronic illness. There is nothing more lonely and frustrating than feeling like finally, you have people you can relate to, then to have that turn around with comment after comment filled with lack of understanding and the famous statement, “I struggle with this too and I don’t have these symptoms/experience such debilitation – so it mustn’t be real.” Or, “Just rest and take supplements. That’s what I do. If you just did this you’ll be fine.”

These conversations are oh so familiar. And how sucky is that?

It’s one thing for your friends who have no idea what living with a chronic fatigue to struggle to understand, let alone people who have a closer understanding and to still feel lonely in these friendships…only because your situations aren’t the same.

There’s nothing worse than being left feeling like your condition or what you’re feeling isn’t valid – or even doesn’t exist.

Who ever may be reading this wherever you sit, if you struggle in your illness or caring for someone who is struggling, please be patient in these things. Be patient in your lack of understanding, and be patient when seeking answers. Please be patient with us who most of the time can’t explain to you in full what we are suffering with daily. You may not see it, you may not relate, but by no means does it mean it doesn’t exist or what we’re struggling with isn’t a thing.

Let’s break down these walls. Chat with people who are suffering from chronic illness, expand your understanding, educate yourself and never leave an impression that will lead others to think what they experience is invalid and doesn’t matter.

Let’s keep striving forward to support each other. We all need different things and we all struggle and cope differently. Keep asking questions and making yourself available, asking, “How can I support and help you? What do you need?” Be silent in a lack of understanding and listen to a friend or family member, and show compassion, love and support to them. Little gestures make a greater difference. We don’t expect you to have the answers, but what we are experiencing daily is real. Please don’t dismiss us.

Hang in there. We are all learning, but we can’t do this alone. We just need to know you believe us. If you give up on us, the recovery will become even longer and more lonely.

Who can you reach out to today? Check in, because your kindness makes a difference.

We maybe doing the same walk, but that doesn’t mean I 100 percent understand your daily struggles. But, know you never walk alone.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: cienpies

Originally published: June 14, 2017
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