What has ME/CFS taught you?



  • It’s undeniable that there are many hardships that come from having ME/CFS. And it is so, so easy to focus on the bad things, the sad things, and all the things that we have lost.

    But what have we gained? What have been the silver linings? What are the lessons that have been learnt? Because sometimes focusing on, or at least taking a moment to consider the good things, can make it just a little bit easier.

    I’ll go first:

    • Compassion. Both for others and the self.

    • To value myself and my health. To look after it.

    • To recognise that sometimes it is okay to fail.

    • To allow myself to let go of anger, it is exhausting.

    • To appreciate the little things.

    • Patience.

    I hope that others can take the chance to reflect. Please know that in making this thread, I am not asking you to diminish the things you have been through, or are going through right now. It took me a long time to feel comfortable recognising that some things can be somewhat positive as well.



  • It has taught me to be passionate and kind towards others and to make the most of what I have got! Also to take each day as it comes. A better person in some ways!



  • @RatsAreFluffy To slow down and rest, to be more “present” and that there is so much good stuff to watch on TV😁



  • After years of gaslighting from family, friends and doctors about my health (long before I actually got CFS), chronic illness has taught me to believe my body's signals. It's still a work in progress, and undoing the conditioning that everything is psychosomatic is something I have to work at every day, but I'm getting better at it.

    I have so much more appreciation for life now. I value simple things like the sky and the trees in a way I never did before I got sick. I can see the miracle in everything. I understand how complex the human body is and marvel that it ever functions properly at all.

    Getting sick pushed me towards finding a way of engaging with spirituality that felt authentic to me. That has been vitally important in coping with the challenges of this illness and has really changed my life for the better.

    Lastly I'm sure a few of you will understand when I say that medicine has become a special interest for me since getting sick 😂 I think this scares doctors a bit because they don't understand why I would be excited/enthusiastic about something like my vital signs, or the pharmacology of drugs...they might think it's suspicious and I'm faking or something. Nah, just autistic 😂 (editing to clarify: this new special interest is a positive thing as special interests bring me joy and engaging in them can calm me down in very stressful/scary medical situations ☺️)



  • @RatsAreFluffy Definitely resilience and appreciation for simplicity.🤓



    • More compassion for ppl who are suffering (not just whinging!)
    • That the ppl you think will stick around sometimes don't, and the ones you don't think will stick around sometimes do
    • That living with this illness takes every ounce of inner strength you have, every single day. We are a tough breed!

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