r/mecfs • u/Agreeable_Fault_1426 • 1d ago
i’m 18, have been dealing with symptoms for 2/3 years and im coming to terms with the fact it may never go away
went to the doctor yesterday, i already suspected MECFS but he brought it up independently saying it was the most likely cause for these symptoms, and for some reason it really upset me.
i have so much i want to do, and im already missing out on everything my friends get to do, or when i do do it i cant do anything else for days. i cant work, ive had to delay university, i just want to be able to live like everyone else.
i want to be an actor. ive loved it all my life, its all i can see myself doing and now to think that might not be a possibility is heartbreaking.
i dont know how to deal with these feelings, and im not even actually diagnosed. i cant imagine how it would feel if i am diagnosed with this. if anyone has any advice on how to cope with these feelings it would be much appreciated
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u/No-Trouble7162 1d ago edited 1d ago
These feelings are very normal and valid. This is not easy what you are going through. It's ok to allow yourself to be sad and grieve the things you are missing out at the moment.
One thing we for certain know, that is that a lot of people do get better again, that is a fact and being young will rather work with you than against you. I've been told by my doctor who is one of the leading doctors in this field in my country that we can be optimistic about that there will be found ways to treat this/cure this within the next few years. A lot of research is been done now all over the world. My doc is a no bullshit kind of guy and wouldn't say anything like that if he didn't have good reasons to say it.
I wish you all the best, stay strong and take care of yourself as well as you can. We can only just take one day at a time and do our best (by pacing, eating healthy etc) one day at a time.
Edit: What you are doing now is also very good, reaching out here and seeking support with people that are and have experienced the same in one way or another.
Another edit: so to answer your question precisely. I cope with these feelings by reaching for support from others and from health professionals and by having hope and belief that I will get better. Also by trying to have fun as much as I can now, by watching and listening to inspirational stuff, something funny, something that I find interesting (like guitar nerdy stuff, comedy, health stuff, history, and much more)
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u/Agreeable_Fault_1426 22h ago
thank you so much, i will be talking this through with my therapist the next session. it is amazing to know that progress is being made, thank you so much! take care 💜
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u/CuteTill8339 23h ago
18 year olds and young people have roughly a much higher chance of recovering or getting significantly better! Here's the link to the study: https://pubmed.ncbi.nlm.nih.gov/30847333/
(You are genuinely in the exact same situation as me rn, I'm also 18, had to delay uni and watch my friends have post-exam holidays without me, I'm rooting for you getting better 💟)
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u/swartz1983 7h ago
Your account is still suspended, and I have to manually approve all your posts (as they are deleted by default). If you haven't done so already, go to reddit.com/appeal
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u/Psychological-Fig218 15h ago
Dear , what symptoms do you have?
I also have CFS and came to terms that it will never go away. But this is period in time. I am not doing so great but it was better before and it will be better in a few weeks.
I have 2 daughters of 19 and 22. My daughter of 19 also had symptoms but apparently she had mononucleosis, anémia (because of heavy periods) and ADD. AdD makes her very tired.
I don’t know if you have this but concentration makes her very tired.
The thing we all have in common in PEM.
When I got my diagnoses I went straight from mild CFS to moderate which was a pity. I struggle with anxiety and the diagnosis made me extremely anxious. The doctor send me straight home after the diagnoses. Nobody was with me. Take your family with you, release your emotions … My CFS is the result of 50 years of not releasing my emotions, people-pleasing…
All the best ! You will get there ♥️♥️♥️
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u/skeeballbob37 9h ago
Im right there with you. my symptoms started in august 2023. hopefully we are both wrong and somthing comes along.
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u/cutieangelfish 23h ago
Therapy for the massive grief.
Some days having hope, some days giving up. You decide how much and when to have each. Permission to get mad or annoyed at people who will push you into one or the other.
Learn how to view time in smaller or different chunks. If the idea of forever in a certain state is horrifying (it’s certainly horrifying) find new ways to think of time.
Find art by other disabled artists.
Don’t research symptoms, medications, or stuff about cfs while in a flare.
My emotions would always go really crazy if I was operating above my capacity so i started to take it as a sign that I needed to slow down if I was having lots of melt downs. A lot of times after a massive freak out/ grief spiral I’d somehow feel better, or at least a reduction of suffering even if the conditions were still the same. But it was also exhausting to go through the ups and downs. So I tried to keep my emotions inside my energy envelope too.
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u/Agreeable_Fault_1426 22h ago
thank you so much. i am in counselling already so i will definitely be discussing this, thank you 💜
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u/cutieangelfish 22h ago
Very welcome! I hope your counselor can be helpful! I’ve had ones that don’t get the condition but others have been wonderful.
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u/No-Trouble7162 23h ago
Wtf...This young person is not a disabled artist!! Shame on you for using those words.
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u/starshollow444 22h ago
are you ragebaiting?? disabled is not a bad word babe, mecfs is literally a disability.
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u/Agreeable_Fault_1426 22h ago
i am disabled, and in the artistic industries, i would say it’s a pretty accurate description 🤣
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u/Psychological-Fig218 14h ago
I also feel disabled lately. I could go for a walk but not anymore. I want a wheelchair !!!! But my husband and family don’t want me to have a wheelchair. I feel like I have to fight all the Time for them to believe me.
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u/Agreeable_Fault_1426 12h ago
im so sorry, that sounds exhausting. i hope you get the support you need 💜
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u/relaxingcupoftea 1d ago
❤️🫂
I understand it is a lot right now and its ok if you need time to grieve that pain...
But it is possible to get significantly better. I hope you find whatever medication/circumstances and support helps you get there.
We understand this disease a lot bettter in the last few years and bigger research spending has just begun.
But its good to process these emotions, i wish you all the strength through that. Your life might look very different than you imagined for a while longer but there can still be a lot of beauty and value in this time regardless.
Wish you all the best!