Last reply 6 months ago
I don’t even know

So. I have m.s. I’ve had it for close to 20 years; nothing has gotten better! So I spoke to my parents today about my disease. I asked why they didn’t do ANYTHING AT ALL?
When I was given a diagnosis of an adult disease when I was still a child? (17, but still not legal) you know what I was told? “You didn’t need us” , “you were okay “…. wow! Now I legitimately nEEDhelp but they’re busy with the grandkids. I get that but I honestly believe because I chose to NOT have kids, ms and all that, I’m no good to them anymore. But no doubt they want to see me, in my miserable state , every week to tell me about how good everyone is doing. And to harp on me about not working! Seriously. I feel like garbage about this but, FUCK THEM!
(Pardon the language) Am I wrong to feel a little bit angry that my parents see me struggle but they can’t/won’t help because (for a fact) I do not have children? I was always iffy about having my own but hen I was a kid I decided because MS, I would for go.

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6 months ago

@aj_mckibben , don’t look back. That’s history and cannot now be changed. We have to live for today, with an eye on tomorrow.

Your parents are probably feeling somewhat guilty of your struggles, after all they “made” you. They probably feel out of their depth in how to help you.

You need to have an open and honest chat with your parents. Agree to put the past behind for all of you and lay the foundations for a better future relationship

6 months ago

Hiaj_mckibben what a shame, you’ve had 20 wasted years. I’m one of the old codgers, have had the beast for 26 years, was dxd at 37 ,but a lot ‘fell into place’ almost back to childhood. Are you on any DMD? You can still have kids if you want them, you are very unlikely to ‘pass’ on your ms. You are born with it and it takes a ‘major trauma’ to your body to set it off to being active, hence the 60/40 split with women/men cos men don’t menstruate or get pregnant😜 You an rant all you like here, we don’t care, you aren’t saying or doing anything we haven’t all done in the past but now it’s time to move on. You can live alone if you want to, you can have a relationship if you want to, you can work if you want to, I won’t say that all this will be easy but nothing that’s worth doing is for us! It only makes us stronger, and you have our support👍

6 months ago


I don’t know anything except what you wrote so I believe what you typed is accurate. With this in mind, you should analyze in 3 parts. Past / Present / Future

In the past from aged 17 to 37, your parents believed you did not need anything from them. If true, that was good; you were able to cope while living a decent life. Maybe not perfect yet nobody has a perfect life.

In the present, you are not getting the support you need from them. In fact (from what you typed), the relationship is detrimental to your happiness & well-being. As @stumbler stated, you should sit down with your parents to see if they are able to ensure a relationship that will help you enjoy life while being around them.

In the future, if a satisfying relationship is impossible; it is time to move on with your life. Seriously! If you are able to find a satisfying solution – great. If not, just move on. Just because Mom & Dad were horny 37 years ago is the only reason you were born; your responsibility is to yourself – never forget that.

The thing to remember is that this is your life & your future. Enjoy it as much as you can…

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