Hey everyone,
Sometimes I feel like the only people who understand me, understand my limitation and pain and who I can speak openly about symptoms even the embarrassing ones are other spoonies. I have been speaking to more and more people with chronic invisible illnesses through useing the hash #spoonie on Twitter, but when I speak to or are with people who don't have these problems I have trouble communicating and getting them to understand how I feel. Most people sort of ignore my limitations and are solely focused on what they want or need.
They don't seem to understand the fact that you haven't slept for three nights, in extreme amount of pain, low mobility and the fact that you had intense diarrhoea all day with stomach pains. Nope all their focused on is the fact that in their view you have made up and excuse of "illness" to not come to their party or missed lunch with them or haven't made the exhausting trip of going round their house. How selfish of you!
The only place you seem to have peace is when your talking to people who truly understand how you feel. The great thing is that they don't say your moaning and that someone is "worse then you are" they understand and give you support. I feel that some people in my life have tunnel vision and only think of themselves so that makes me more hardheaded and stubborn so I will survive with the help of my husband and we will say that we did it without there help!
So in conclusion I love being a #spoonie! I have people I have never met being more sportive them some people in my life. So I support and are thankful to all my #spoonie warriors who together we can fight against anything that is thrown at us!
Living with a chronic illness, running our own race, following our own path!
Hi Pat, I've had ME/CFS for over ten years now and recovery has been slow. Part of that can be put down to people not understanding my limitations (which in fairness I'm not great at doing either) but I try too hard to override this by not disappointing their expectations - they never see the state I'm in the next day!
ReplyDeleteWell it's going to be a trying time cos I'm letting a friend stay with me while she relocates. I've tried to express how this illness effects as we've been friends for getting on 14 yrs. I don't want to go on about how the illness is making me feel all the time but I don't think I've ever got it across to her before, there just seems to be little recognition. Only sleeping for 4hrs a night for the past 4 days yet being really exhusted is met by "maybe that's just your cycle."
If anyone has any tips for how to explain things they would be greatly welcomed. She's a very sweet friend but I need to stop trying to be 'normal' and getting so warn out about it or it's going to be a long month!
Kind regards
Emma, Twitter: EC1ecoem
Hi emma,
ReplyDeleteHave you tried reading the spoon theory to her? it might help in trying to get her to explain. Be stubborn and only do what you can do and they will have to just except it! The only one whose suffering is you so be selfish think of yourself as no-one else will!
Wife and Mother twitter sinister416
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino