Thank you for sharing this! I have suspected hEDS and have been in chronic pain for. as long as I can remember; my mother has always been one to say "I'm 37 years older than you it's not possible for your [body part/s] to hurt as badly as you're saying/as much as mine" and now I have an explanation, and a path of action
You covered so many things, all of which speak directly to me -- so many words of wisdom that I will need to listen to this video a few more times to take it all in. Thank you so much!
Thank you for this video. I have always shared as an understanding compared to their experience. But this gave me a wider understanding. Though I suffer extended pain with stress to the muscle it isn't a comparison just an understanding.
Thanks for this! My biggest struggle is not going overboard in correcting someone who is not understanding how much pain I am in. It's important for me to give friends and family an accurate view of my capabilities, but lots of the time my explanation ends up degenerating into suffering comparisons. Anyone have any tips on how to manage these types of discussions?
Excellent question! Conversations like that can be hard to navigate, especially if the person on the other end isn't listening to understand. Personally, I try to keep any explanations very short to allow room for questions - people who genuinely care will usually ask follow-up questions and will be willing to fully listen. If it's something more like a family member saying "I don't understand why you can't drive 30 minutes to be here for Christmas dinner, your grandma is driving 60 minutes, and she's 80 years old!" You could respond with "I understand grandma is old and has health problems, but we have different health problems, and my health won't allow me to make that drive. I'd be happy to explain the details about why I can't make it, if you're willing to listen." Then the ball in in their court to decide if they want to emphasize or not. Hope that helps a little!
My sister is always the one who compares her pain to my pain and I find that very annoying and very invalidating. I feel like she doesn’t understand how much I feel and how much pain I have to deal with on a daily basis and that to everyone MY Pain is invalid because I am suppose to be able to do everything. She has Fibromyalgia, Osteogenesis Imperfecta and Scoliosis.
