What I Wish Others Understood About Life With Chronic Fatigue Syndrome

I don’t expect you to understand my daily struggle. How reaching the bare minimum is exhausting. How trying in itself can be so tiring, plus the failure to reach the standards the world has set. Having chronic conditions can be one of the loneliest journeys to tread. You tread on a road full of lack of reason, understanding, the pressure to over and over meet the expectations of others. To meet every deadline, hang out, social event, party, etcetera.

Everyone, it’s not easy as that.

Recovery in itself is exhausting, trial and error, set back after setback. What more do you want from me? Is so often my cry.

Support. Understanding. Empathy. Kindness. Those are all key.

I don’t expect you to understand why I have to cancel as late minute as it may be. Or why I can’t just keep pushing through like you or someone else. Or why I freak out when teachers tell me my essay is due in two weeks, and how that is is plenty of time…Or there’s no excuse not to do your reading, or make it to class. I so much of the time just can’t. When my body says enough is enough, I have reached my capacity and limit, I just need to stop. Sorry, my body timing is inconvenient, but I’d rather let go of things that have me full in a heap in your company.

We talk so much about self-care and the importance of not wanting to burn out, yet when it comes down to it, how willing are we to support that with someone we know? Please encourage it, don’t say it’s disappointing when we cancel. I’d rather be as well as I can to see you than feel more disappointed, pressured or feeling like I can’t be fully present when I am there. Driving is exhausting. Chatting, listening, eating, functioning is exhausting.

The consequences of pushing myself daily the downfall of that are so much greater. It puts me in bed for days. It disrupts my ability to cope. To function. I can not meet the expectation you have placed. Please don’t have such expectations on me. It hurts too much. It’s too tiring.

You don’t see the pain, the fatigue.

The tears of exhausted or the cry out of pain.

How this impacts every aspect of my life.

I feel like a failure enough.

Help me to not see that more about myself.

We talk and plug self-care so much, but when it comes to it, we can not snob it off, can not hate others for it and you reach the, “I’m disappointed in you status.”

Be kind to those around you.

Especially those who are struggling physically and mentally.

There is one thing that hurts sometimes more than anything, and that is seeing you hurt when I am hurting. When my body crashes, when I am in so much pain, it’s too much. When I can’t eat on my own and you are there trying to figure out how to support me, what you should do.

I don’t know about others, but I hate feeling like that burden on others.

So I push it.

Please lift your expectations off and from me.

Encourage me to try, but stand by me when I fall down.

Don’t give up on me – or I might just give up on myself.

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