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Members connected deeply over the challenge of explaining fibromyalgia to people who only see them on good days, with many sharing how... Read more
Usually if I see people I’m ok for a short amount of time. But if they lived with me for a week they would see what I’m really like.
Thank you to you both.. it's been a long journey but I know God is with me the whole way directing my path. Blessings to you❣️
@A MyFibroTeam Member just wanted to say something supportive and grateful to you for sharing your experiences with parents. I'm SO glad you were able to protect yourself and limit contact. Good for you. 🙏
@A MyFibroTeam Member That is such a great question and I think it is one we all can relate to. I think, for me, it depends on what the relationship I have with the person is like. For example: Are we close? Then maybe I could take some time to explain how invisible illnesses work. If it's someone I'm not close with, maybe I'd just shrug and say something like, yes, you see me on my good days not the three days I need to prepare for it and the three days or more I need to recover.
And also what the motivation might be for the question, what the context is. Are they sincerely curious or are they hoping I can help them move haha!
That's one thing I don't worry about what people think when I'm out. Let them think what they like. It's their mind working overtime. Family are the challenge or were the challenge when younger. I know longer have that challenge now. If anyone doesn't like anything about an illness and can't be bothered jog on. 😂 I've got the people I love and care about that's all that matters.
🌼🍂💖
I smile and say” Thanks, I’m sure glad I don’t look like I feel!” Then change the subject.
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