My mom (once again) is talking about how I will get better and be able to do this or that in the future. It is so frustrating because I am still trying to accept my disability and it is not something that gets better or allows me to do more as I get older. It is chronic. Why can’t she understand how this works and help me accept it instead of making things up about potential future things that aren’t true or helpful? I wish it would get better in the future, but that’s not realistic.
Ehlers-Danlos Syndrome (EDS)
Chronic Generalized pain
Sounds like you need to set up an appointment with the doctor or specialist specifically where you bring your mom with where you bait questions like "i was just wondering how this will affect my future since it is CHRONIC" and such. It doesn't sound like she will believe anyone else
that’s a good idea but I get super anxious at the doctors (ironic considering how often I go), and having my mom makes it a lot worse, it’s hard to even speak. I’m leaving for college in a few months, so I will be on my own, but I love her and wish she could understand what I go through on a daily basis.
yes. Great idea. I have always been blessed with supportive people so I don’t have much advice on helping others understand, but I have had trouble accepting it myself. Knowing this condition will only get worse can be scary, but it’ll be okay. I can try now to make my life later as best as possible
how long have you had a name for your disability? it took my dad a few years to accept that this really isn't going away, I really am just sick all the time. most able-bodied people don't wanna face the concept of constant pain, especially not the idea that if it happened to their child who's half their age, it could happen to them too. it's terrifying to try and comprehend it when you're not actively living it, but seeing it unfold in real time tends to be a wake up call for them
I got an official diagnosis 2 years ago, but doctors have assumed I have eds and pots for the past 4. Neither of my parents have it, it’s genetic and they would know by now because the symptoms are pretty severe (at least for me). I’m always in pain, I use mobility aids, my joints dislocate all the time. They see it they just can’t accept it
at least one parent definitely has EDS, their symptoms may just be more mild than yours. my mom didn't know she could even possibly have EDS until I got my preliminary diagnosis (still waiting on that geneticist three years later🤞). give them a little more time, when I say it took my dad years I mean I've used a cane for ten years and a wheelchair for eight years, the last three of which have been full-time. worst case, they never get it and wonder why you don't call them or come visit anymore once you move out 🤷♀️ sucks that they won today's game of Guess Who's Going Straight To The Nursing Home
Lol! My parents are probably carriers, but neither has it. At all. According to my doctor, that’s a thing, it’s just rare. So I’m extra rare, yay! 😕
I’m trying to be patient. I love them and hope they can understand someday even though they don’t have any version of it.
I have this same situation and honestly bringing them to appointments doesn’t even help if they aren’t willing to give up the idea that things will get better. I think it’s just their way of being in denial but it’s super unhelpful in trying to accept what the future may hold. Unfortunately I don’t have great tips except for trying to set boundaries. I’ve done this with my mom by telling her she can keep the positive hopefulness but not to share it with me because it does not help me cope. I’m sorry you’re going through this
Ugh, I feel this, MJ. 💞 My mom is the same way, to the point where she even questions the diagnosis (even though she has it too, ironically)! It's tough. 😔 I think it's hard for parents because they blame themselves in a sense, but them understanding and coming to terms with it is not your responsibility. 💝 It may take time, and you may find you need to set some boundaries and that's okay! Try to keep supportive folks close and give others space to accept you as you are.
Always remember you dont ever have to.Validate your illness to anyone.you suffer in enough ,Ignorance is bliss ,def bring her to your next appt.Thats exactly what I did and let me tell you the got the message ❤️
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