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Hi everyone... I feel that a big stressor for me is trying to help family members and friends understand this illness. Are there any tools or anything that any of you have done to help them be a bit more understanding? I feel that my family doesn't honestly believe that I have this illness because I look fine, I don't complain much & pretty much try to hide how I feel most of the time. Even though I was diagnosed by 3 different Drs. One being my family dr & then 2 different rheumatoid Drs. I… read more
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Members shared the challenge of helping loved ones understand fibromyalgia, with many finding that even well-meaning family members struggle... Read more
My Rheumatologist told me to Google the spoon theory and print off copies for friends and family members to help explain fibro. I have found it really useful. Give it a try. Gentle hugs
This is a touchy topic and one I plan to write about on my blog in more detail. I would say small doses is good. Giving too much at once is not only overwhelming for you but also for them. Maybe having mini family meetings giving them a little information at a time and asking them what they think and how they feel about it. Having open communication for everyone to be able to voice themselves I think is key so that way there are no assumptions as to what the other person is thinking or feeling. At some point, you will have to tell them that you can't do everything you used to do and that you need their help. They will either understand or they may feel resentful, but one thing to try and do is help them see that by them helping with chores and you are able to rest which allows the family to be able to do something fun together later. When they help you, they are helping the family unit as a whole. Love, communication and understanding are so important! I hope this helps even if in a small way.
My husband is a great support. My family (parents and sisters) say I exaggerate and lie. It hurts tremendously...especially because I could use support. If I went to them with anything like the spoon theory, they would roll their eyes and call me dramatic. On top of this, they "poison the well" (as my husband calls it) by telling extended family members about not to take me seriously as well. I have learned to just distance myself.
My husband makes it a point several times a day to ask me what my spoon count is at. I am so incredibly lucky to have found him. He told me today that he would give me some of his spoons if he could ❤️
I think those closest to us know that it's all relative. My daughter also has Fibro and when either of us is having a bad day we will say feel better. We understand it means getting back to functional level for us
I love the spoon theory I am going to do that ;)
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