I've just been out for a bit of a walk on my new crutches Wichling I got on Friday. I like to try & keep as active as I can plus I need to get used to the crutches as I've never needed them before. Anyway, I bumped into an old friend. As we were chatting he asked "what's with the crutches" so I told him about the EDS/HMS to which he replied " that doesn't exist you're making it up". We got into a bit of a heated discussion. He is no longer a friend. Why are so many people ignorant ? I'm sick of hearing this attitude all the time. Just coz I look fine doesn't mean I'm not in agony most of the time. No one seems to care or want to listen. I'm just so fed up & down. Just wish I could be happy again.
I'm so sorry this happens with you . I to get this all the time. People always say but u don't look sick. Or u look so good. It hurts and it makes me so angry.. Almost like they are wising u looked like death. ...I don't have the answer for how to stop this behavior but I too wish it would stop. Just know we believe u. And we know your pain is real. And I'm sorry your are having to deal with daily pain and set backs. But just know u r amongst friends. Its gonna be alright. Take care.
Thanks newfibrogirl . This group is brilliant. It's the only place I've found where people are willing to listen & actually understand what I'm talking about. It's so good to have somewhere where you can get things off your chest and not be dismissed as a liar.
Yanbo, I am so very sorry that you had to lose a friend and deal with those absurd comments!! I know that many times I go to pain management and when I am feeling my worst they tell me how good I look! I usually respond by saying, "are you trying to tell me that I can't be that bad off because you think I look good?!?" Well, we KNOW you're hurting and that your pain and diagnosis are real. I'm sending you hugs and hope you have a better day. Remember we're all here for you!! I wish I knew how to make it stop as well but know that you have a huge support system here with us. I wish you all the best. 🌻🙏🏻
Oh we understand thats for sure.. i stopped telling ppl what was wrong because i was sick of trying to explain something to them they couldn't or didnt want to really try to understand. .i dont even know why ppl bother asking to be honest.. i think they expect to get an im fine, i just twisted an ankle or something of that nature. Anything more than that they just dont get or really dont care. Sorry you had to deal with that !
Yanbo, I'm sorry you lost a friend. I know that hurts, besides what they said to you. I don't think anyone has ever out and out basically called me a liar. That was no true friend. Sometimes it amazes me how people do act towards those like us. My mother in law has known for decades she'd one day go blind from her glaucoma. A stroke last year took what little vision she had left and we placed her in assisted living. Every time we visit she complains about how bad her life is and it wasn't fair that it happened to her, like it should happen to anyone but her. She even said her housemates have nothing wrong with them. I told her just because she can't see other's problems doesn't mean they don't exist. I asked her if she could have her vision back but had to take on the problems of another, like me, would she do it. She said, "no I don't want your problems or anyone else's." Her problem, and the problem of most healthy people is that they don't want to be bothered with an imperfect life, or with people like us. You may have lost that person as a friend Yanbo, but you've got all of us to replace them! (((Hugs)))! 🙏🌼
That blows. It's a shame so many people are friggin morons. I have also almost lost friends because of it. I guess we can all be thankful that we have each other to come to with this shit.
It breaks my heart to hear what kind of bullshit some of you have to go through, and not just from passing friends but from husbands, wives, and family members saying you make it up! I cant imagine my family saying those things, but if they did im pretty sure i wouldn't be talking to them anymore. But that's easier said then done I'm sure.
I'm sorry for your pain. I wish there was something I could do to make things better. I had a cousin who didn't believe my pain until one day he saw me in bed inbtears because of it. Then he changed he attitude and was more understanding. Don't know why it took that to believe me. But most people still just brush it off as nothing. It hurtful, but I try not to let it get to me so much.
So be strong, because though we are not there physically we do care, we support you, and we have you in our prayers.