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No One Prepares You for the Grief of Chronic Fatigue Syndrome

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No one prepares you for the grief and feelings of inadequacy you get when you have chronic illnesses. They make such a huge impact on your life that they derail you, stop you from achieving the things you’re working for in the time you’d planned. You end up feeling like half the person you used to be, or at times you sit and wonder where the “real you” has gone.

Chronic illness takes so much out of you through dealing with pain, fatigue, sickness and no end of other problems that you never have time to catch your breath and really process what’s going on. Then, one day, you stop for just a second and realize you’re totally lost in a never-ending maze of appointments and hospital visits. Your medication stock is the equivalent to what many elderly people have because your symptoms are so difficult to control. Yet, people don’t understand and you get told it’s perhaps time to admit medications don’t do anything apart and don’t deal with the problem.

What they don’t realize is that a lot of the time, you can’t function without your meds and they give you some quality of life you wouldn’t get without them. You sit trying not to cry when you see the life you wanted for yourself slipping away before you eyes. You’re desperately trying to figure out how to adjust to your new normal because it keeps changing, but this time it’s changed too much and you feel lonely and lost because no one around you understands what you’re going through or what it’s like. People look at you like you’re “crazy” when you tell them you feel like you’re grieving for the old you and all the things you wanted.

My dreams aren’t out of reach; they’re just further away than they were before. The constant fighting for everything you want or need is exhausting and, sometimes, you wish someone would come and take over for a while and just take some of the pressure off because it’s getting too much. You’re holding onto your dreams with everything you’ve got, yet at the same time, you can’t focus so you can’t complete the things that need doing in the time you’ve got. You want to, and you’re shouting at yourself to get it done, but you can’t; your head is just so busy with other thoughts and desperately trying to cope with everything that’s being thrown your way. So, you can’t focus on the thing you want to be doing.

Sometimes, it feels like no one has the time to hear you; family are busy and often don’t take your calls, friends have their own things going on and none of them really understand anyway. The pressure is mounting and you don’t know who to reach out to anymore because most of the people who used to be your support system have lost interest. It’s so lonely being chronically ill; it feels like wading through a thick fog and you can’t see very far in front of you, so you never know what’s around the corner. Yet, you can see other people have it worse then you, so then you feel guilty for not coping with the level you’re at because you should feel lucky you’re where you’re at and not somewhere worse. Logically, you tell yourself you wouldn’t say that to anyone else, but you’re not anyone else, you’re you, and no one is harsher toward you than yourself.

I’m tired of feeling alone and lonely; tired of fighting and trying to prove myself to others; tired of seeing teachers lose faith in my ability, watching them give up on me. I’m tired of trying to reach out and explain how I’m feeling and not being heard or even given the time. I’m tired of being the person who has to try to pull myself out of this awful place every time because sometimes I can be fine and other times I just need a bit of support… but no one is hearing me. I’m safe but I’m struggling. I don’t know how to do this on my own.

I’m waiting for the calls of “attention-seeking” in fear, although that is not what this is; pity is not wanted or needed. Perhaps consider the point one has reached and what they have been through before they will post about their struggle with chronic illness.

Photo by Samane Mohammadi on Unsplash

Originally published: August 10, 2019
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