Talking about MS

[tomas2729]

Has anyone else stuggled with tellling people that you have MS?

I just posted on my facebook asking my friends to support me in an MS walk because I have the disease.I just have to say, I feel kind of weird about the whole thing. It's not that I am ashamed or anthing. I just felt kind of funny to put it out there. Also, my neighbor asked me to come and play some football with him some time and I had to tell him I couldn't because my legs were not strong enough. He looked at me like I was crazy so I explained. Again, it felt kind of weird.

I'm sure you get used to it over time..... It does get easier to talk about right?

Tom

[tomas2729]

Thanks for your encouragement guys. I really do appreciate it.

[debgen]

Hi Tom,

I went for many years without telling anyone except my husband and brother. After a series of intense relapses my condition rapidly began deteriating. At this point my walking became very compromised and I now need to walk with a cane or even a walker on bad days. It is very obvious that I have difficulty walking. I am very honest now about having MS. People have been very supportive. I am still self conscious about the cane and/walker but it really is my new normal.

I am sure when you feel that it's the right time  you will choose who you want to share it with. It really does get easier over Time. I also found that it was easier than making excuses for things I was unable or not comfortable doing.

Good luck with your decision,
Deb

[gmteach]

I have been dx'd since '97 and still very few people know.   I originally just told my family, but was afraid to let anyone at work know.  At this point I can pretty much count who I have actually told, and it is now on a "need to know basis".   The reason I avoided was because people would say, "Really, you look fine." and I hate anyone asking me how I am feeling.   Sometimes I wish more people knew because when I am having a bad day and I am at work, it would be nice to get a little more help, but I guess you can't have it both ways.   Good luck with whatever you decide.

[Guitar_grrrl]

I've pretty much been an open book.  Not that I wear a big sign on my chest, or anything, but if the subject comes up, or I'm having a particularly bad day, I have no trouble explaining what's happening.

I've recently started using a cane full time outside the house. Now, that feels weird!  I can still walk, and everything, but sometimes my L leg doesn't get the message to move, and it doesn't, and over I go!  Or I stagger to regain my balance.

I guess I'll get used to that, too.

[doublevision1]

It does get easier with time.  I didn't discuss it with anyone other than my husband and my best friend for a very long time, like months.  I actually did feel ashamed, which is really dumb, but I did.  Like I was dirty or something.  Also scared, panicked, anxious, strange, fragile, weak, pathetic, lame, you name it.  When I initially would disclose to a friend for the first time, I would break down.  Took me a long time to be able to say the words and not cry.  I wish I'd known then that it really would get easier, both to live with and to talk about.  What makes it easier is to just talk about it even when that does feel strange, at appropriate times of course, like asking or support for a fundraiser, or when someone invites you to play football and you can't.  Just like you're doing.