Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
This community is a place where members can discuss current events and weigh in on what's going on in the world.
My advice would be that it's all about your own attitude when you are telling someone, if you are in a situation where you need or want to explain.
If you look and sound depressed when you tell people, they will react accordingly. I know that's difficult to start with. If you're having no major symptoms at present, do you need to tell anyone?
I know there are time you will need to, so for me, I try to downplay the limitations, tell them that I've had to take a step back or slow down on some days or activities, but otherwise I'm still tackling life and work as I always did. When they see me with a cane they know it's a low day, and I get asked if I'd like a coffee more often (it's a bit of a walk to the kitchen at work!). And on the good days, I sometimes get positive comments like 'good to see you're having a good day'.
Perhaps that's not how everyone would want it, but I find my friends and colleagues to be very supportive. I've always been open with them, been independent as much as I possibly can, so that they know when I ask for help, I really need it. Mostly people are just interested/curious about why an active person has suddenly started walking with a cane and when they know that I'm still me and nothing has really changed other than I limp a bit, they are happy that I'm coping.
And on the days that I'm not coping (because I do still get those), I take some time to myself to vent the frustration and anger, then get right back in there and show myself that I CAN still do it.
Don't know if this helps, but I hope it did.
Good luck to you and keep trying. It does get easier.
I've found often the way we handle the diagnosis, defines how others will handle it when they find out. You will control, to an extent, how others handle things.
I don't advertise the fact I have it, but would never, ever consider trying to hide the fact either. There's no reason for me to be ashamed of MS, and don't see the reason to hide it. It's just a damn disease! Don't give it more power than it already has!
I had a very hard time telling my son. He has always seen me as really strong...and I fix the toilet and put the air conditioner in and all the other stuff around the house. It was strange because I was dxd right after he graduated from college, and I think that while he was no longer dependent on me in the everyday things, it was hard to see me as getting weak. It scared him.
It was hard to tell my father because he couldn't do anything about it, and that is what your parents want to do, no matter how old you are, right? My child is sick and what can I do?
Telling the boyfriend was not really hard...he knew something was wrong, and was just happy when I said I wasn't dying. I think it is as much your attitude towards your MS as the words that matter.
Good Luck
When I feel I have to tell someone, like a potential partner, I try to be straight up about it. It's easier if it comes up in a convo like, what did you do today, "I had an appointment with my neuro" or "I had to take a shot for my ms". Then just go from there... you decide if you want to tread lightly or if you'd prefer to give more info about your specific MS.
Some people are open, some people are more private. There is no right or wrong, it's personal and individual, like the disease itself.
It's funny how you soon notice how open or closed other people are about their non-ms ailments. For me personally there aren't many times when a situation mandates telling, unless I'm thinking LTR.
What I truly don't like is when others tell people for me, like I'm not there or something. Unless it's someone who knows someone recently dx'd and scared, then I'm happy to do all I can to help them through. I can't count how many people from my hometown called me to tell me they're sorry. It's like, I haven't talked to you in 5 years, now you want to know me? How's your bitter divorce going? Wanna talk about that?? lol.
As long as your friend will encourage you to do the best you can and will be there when you do need them, tell them or just let it ride and take life as it is.