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I’m yet to be diagnosed but I’ve had the symptoms and the difficulties for many months now .. the closer I get to a diagnosis the harder I find it is for my family to understand.. it’s hard enough going through each and every symptom but going it alone it makes it even harder .. any advice for them would be amazing..
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I highly recommend you all sitting down together and watching the documentary "Unrest," about the filmmaker's struggle with ME/CFS. It shows what it's like living with this illness, without getting maudlin. I believe this film is available on many platforms, including iTunes.
Send them links on articles or conference videos on youtube . But goid luck with that. Most of them dont read them or watch them. I cant attach any for you on here, not allowed, but i may be able to send private message. My father, I think finally believes me after 27 years. He always read crazy stuff in the news and would send it to me like, you have
exhaustion or you're in hibernation, when for years I told him its a chronic virus. Ebv. Good luck and don't worry about them. Just listen to your bodies needs. Nutrition and rest.
Its just about being honest at all times with them too. My mum finds it difficult to watch as she feels she cant do anything to help and that makes her feel like shes not doing what a mother should. Just on one of your "bad days" or "worse than normal days" explain how your feeling. Let them understand what its doing to you in that moment and even that converstion helps them.
If you walked with a crutch they would u derstqnd but because they can't see anything they don't get it. I gave up trying to,explain to anyone. Instead I focused on getting better and I am. I upset and lost friends along the way who didn't understand when I suddenly cancelled things.
Did it matter, to me no, because my top priority was getting better and by worrying about everyone else and what they thought I would never get better.
Its only when you stop doing things and rest that they may start to get it.
I think it's worth trying to remember that generally, we're not very good at understanding one another. I think that there are things about living with a chronic illness that are very difficult for healthy people to understand... and it may not be worth the time and effort needed for them to try. Maybe it would be good to encourage them to realise that they do not understand, rather than the more difficult task of getting them to understand? Hopefully things will improve for you, people who have not been ill for long (less than two years) often seem to naturally recover. Good luck.
Thank you for your thoughts x
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