Last reply 6 months ago

Hi my name is Billy Sutton. I was diagnosed with MS 7 years ago but kind of knew it since I was 19. I’m 51 now. Just had episodes over the years with long breaks where I was just fine. I get depressed and annoyed because most people don’t have a clue what we are going through. Even so called friends and family just don’t get it. So I say screw them. But it does get frustrating. Anyone feel the same?

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6 months ago

@kbmsutton1 Hi Billy. Yes, I feel this way too. I find it annoying, as well as sometimes hurtful, that people close to me don’t even seem to want to understand or pay any interest to understand how my MS affects me. I felt I had much more support when I was going through the initial stages and diagnosis but now it seems everyone has moved on / forgotten.
But maybe I’m being unfair because on the one hand I don’t want to be treated any differently either but I guess I just wish that even my partner, would understand that despite wanting to, I can’t do the same things as him. I think he thinks I’m making it up and being lazy and has never seemed to take any interest in this aspect of me and my life and the constraints/struggles 🙁 Maybe people just aren’t going to be interested unless it somehow affects them. It would be nice to feel that they at least cared though as i’m sure I would if it were someone I cared about…

6 months ago

Hello @kbmsutton1, yes, this can be an isolating business. Also, when you do tell people the novelty can kind of wear off. This is such an inconsistent condition, I guess it is quite hard for others to keep up with our ebbs and floes. I hope you are getting regular check ups and that you take something for your depression?

6 months ago


It drives me crazy when somebody makes two separate topic threads on the same topic; I am going to ignore the other one since @bahamallama responded to this one. And I agree with their response… 😉

I am in my 60’s yet recognized in my teens that 99% of people only care about themselves & their path in life. Nothing wrong with that; most are not bad people – this is just a fact.

Over 7 billion people on this planet; you are in your 50’s & probably had serious discussions with 1,000 maximum. You narrowed that number down to create your circle of fiends / family / co-workers…

You have hit a speed bump in your life & are finding that the circle you thought you could count on is much smaller than you believed. Hate to burst your bubble but this is NOT an MS thing.

I am presently involved in Seniors Slo-Pitch (can’t play anymore); we have members in their 80’s & 90’s – the reason they come out is to socialize. Their circle of support shrinks every year which is why they keep playing although their physical ability is a shadow of themselves at 20…

To get to my point, the MS thing is weeding people out of your life that should not be in it. But you are still young enough that there are tons of options to meet new people; you need to focus your free time doing things that you enjoy. Which you should be doing even if you were 100% healthy.

Just my thoughts…

6 months ago

Hi @kbmsutton1 and welcome.

Yes, as you’ve seen, there’s a fair few of us that share your frustrations. The world is an ignorant place sometimes!

6 months ago

@vixen yes I see a Psychoneurologist once a week and go to John Hopkins in Baltimore every 3 months. Have 2 Neuologists there which is rated the best MS facility on United States. Very lucky to get in there and have 2 fantastic Doctors. Thank you for all the respondes. We can definitely lean on each other

6 months ago

I completely understand and by writing a blog, diary, I find it not only helps me but importantly give people an understanding, have a read

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