Seeking to connect with MS'ers who don't "look" like they have MS....

[steph8]

That may sound weird, but I have been what some of my neurologists called a "high-functioning" MS'er. Although I needed to take early retirement because of the MS, I still don't look "sick" (or whatever).

I have recently met another MS'er in the same boat.

We would like to connect with other MS'ers who fit that category.

Hopefully, this does not seem inappropriate or insensitive to other MS'ers...

We have found that some of our challenges are different than challenges some people face when they "look" the part.

We feel like our support pool is totally limited. We appreciate what the MS Society provides, but we haven't found anything that seems to be as nice of a fit as what we would like.

[Queen Lavee]

I fit the bill and I hope for a while.
I met the first MS person ever last night at a TEVA program. She was at her normal normal not the dreaded new normal. We were both quite greatful.

To admit this should not be shunned or considered inconsiderate because we are all at different stages. MS has many faces.

Greatful.

[misslux]

Honestly, I do find it insensitive.

While we are all at different stages, I feel it creates an unecessary divide similar to the "waiting room" thread.

Your symptoms may not be visible, but that doesn't mean that those with visible symptoms don't understand or sympathize or haven't been there.

Just my two cents.

[Queen Lavee]

[Chowda]

What is a visible symptom and how does one 'look the part'?

I'm new to all this.

[Queen Lavee]

I am new to this as well diagnosed July 2013 the best I know no one gets the Scarlet MS stamp to the four head.

For me my eyes crossed I couldn't walk and then I had to use a walker I just looked as if I was a medical patient not necessarily an MS patient.

I went to my first MS conference this week two people asked whether it was me or my husband. There was no visible way to tell.

On the flipside of that there were people in power chairs people walking with canes people with obvious nervous twitches. If I had any of these issues I still would have gone to that meeting.

When I returned to work in October I was shunned by a Dr. for taking the elevator to the second floor and why didn't I take the stairs because I looked fine. She, this doctor I had never met before or have ever seen again couldn't see that I could barely lift my leg to get in the car or that when I stopped walking I had to lean on something not to topple over. She didn't know how dizzying it was for me just to walk down the hall.

But I was judged for being lazy for taking the elevator.

We all have a cross to bare, some just are not visible.

[KatieAgain]

I have met hundreds of MSers who have MS and I have been a highly functioning MSer myself at times. But I can honestly say I have never met a highly functioning MSer who could not work.

Try Active MSers. There are some pretty nice people over there that would fit your criteria.

There are a lot of us with serious issues here. I am embarrassed and ashamed at what you wrote. As a Community, we are trying very hard to get people to understand and embrace us and MS. We have a serious problem with acceptance at home, work and the Community. Discrimination is rampant...please do not contribute to that.

I hope you never look like you have MS. I truly do...MS sucks. But if you do, come back here, because there are a lot of people in all stages that probably have bigger problems than you that will help you and support you through those challenging times.

MS does not discriminate and we are all in this boat together, warts and all!

[Kalliope]

Sorry-I look AND sound like I have MS.

If you ever get to the point where you "look" the part too (and I truly hope you don't) your sadly mistaken if you think you won't be judged. I am judged for using a scooter in a grocery store because people think I'm to lazy to walk, even though the truth is I can only walk short distances and that is with a great deal of trouble.

They have no idea the pain I am in, the fact that my legs won't hold me up or at times even move anymore. They have no idea that this is a great day for me because first, I was able to get out and second, I did it without being in my own wheel chair!

I have been told I could be fine if I tried harder and didn't give up. I guess that would fall under judgmental ignorance. If people see me taking medicine than I am judged for being an addict. If we go out to eat and my husband cuts my food for me I get judged for being lazy and he gets comments about how I have him whooped.

When we are around others, no one has any doubt who has MS-I have many visible signs of this disease, but still, I am judged. There are some that see disability as a weakness and therefore will judge you even thought they are clueless.

Out of curiosity, when you say "On the flipside of that there were people in power chairs people walking with canes people with obvious nervous twitches. If I had any of these issues I still would have gone to that meeting."-if this is true, what difference does it make whether or not people look the part of MS for you to want to have contact? I, and I'm sure others have at some point dealt with the same challenges you have, after all, I didn't start out where I am today. It's a progression I wish for no one.

I can only hope that as my MS progresses, I can call on the wisdom of those who have gone through it before to look for their support and help in the way they handled it, live with it and what they did to make anything better. I'll be sure to let them know I appreciate them and the insight that they bring.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[misslux]

Katie and Kalliope, well said.

Chowda, if you have mobility and/or spasticity issues, it's all visible. If you don't and "only" have cognitive, fatigue, etc. it's not visible. Though I think it's important to note that almost everyone with visible symptoms also has all the invisible symptoms too, so you know, double whammy.

[Special Kay]

The MS society where I live (NYC) has a series of ongoing support groups called something like "But you look so well" for people who hear that kind of thing all the time. Maybe such a thing exists near you?

I will say that I went to a support group for the newly-diagnosed at the NMSS and since I had a much lower symptom profile than many there I basically kept my mouth shut and was very uncomfortable speaking about any of my problems, sadness, and challenges.

I had occasion once to speak with that group's therapist one-on-one, and she acknowledged that it could be especially challenging for people like me who, though still traumatized, might not be very well accepted or understood by others with MS. There needs to be sensitivity on both sides, and when everybody is traumatized, that's hard.

Anyway, I have not been to a support group since then, and honestly haven't felt the need for one.

[Queen Lavee]

[QUOTE=Kalliope;1442700]


Out of curiosity, when you say "On the flipside of that there were people in power chairs people walking with canes people with obvious nervous twitches. If I had any of these issues I still would have gone to that meeting."-if this is true, what difference does it make whether or not people look the part of MS for you to want to have contact? I, and I'm sure others have at some point dealt with the same challenges you have, after all, I didn't start out where I am today. It's a progression I wish for no one.

Kalliope the point I'm making is that I myself would friend anyone regardless of my own visible issues.

The original poster is looking for a particular type of MS patient, I would help them if I could just as I would help you in some small way if I could.

I only post to learn or help someone, not to ridicule them.

If I can't add positive help to a post I don't post.

I hope this answered your question to me.

Good day.

[Picture me]

KatieAgain you are my new hero! As for steph8 you are in need of this group more than anyone. I have had nothing but love and support from the people on this site. In my eyes you need to make a new start. I noticed this was your first post. Read, educate your self and find community in all who express themselves here.

[Kalliope]

For Queen Levee-

When I read your reply to my question, it didn't make sense to me till I realized that you weren't the person who started the thread. I thought your post and the one that started the thread was from the same person. I realize it wasn't you that is looking to connect with MS folks who don't "look" like they have it.

Finally figuring this out, I have no curiosity and wouldn't have asked in the first place. For this I owe you an apology. I'm sorry, I was confused.

I hope you accept my apology. But as far as the being judged part-sad to say it doesn't change, at least not in my case.

[Queen Lavee]

When I read your reply to my question, it didn't make sense to me till I realized that you weren't the person who started the thread. I thought your post and the one that started the thread was from the same person. I realize it wasn't you that is looking to connect with MS folks who don't "look" like they have it.

Finally figuring this out, I have no curiosity and wouldn't have asked in the first place. For this I owe you an apology. I'm sorry, I was confused.

I hope you accept my apology. But as far as the being judged part-sad to say it doesn't change, at least not in my case.

I absolutely accept your apology, I am here to learn and help any way that I can. If that includes making a friend along the way I'm all for it.

Blessing and good health to us all.

[Jrasted79]

I recently met someone in my area through an online ad that was wanting to meet new people in the area as a means of support. I'm young, look good, but am pretty disabled by the disease. So much that I have applied for disability at 34 years of age.

Anyways I now talk and text with my new friend often. We are great support for each other. The problem is he'd really like to meet. Totally platonic btw. But I am kind of afraid to. He is much, much further progressed than I. His speech is affected, in a wheelchair, always in the hospital, motor skills are shot. He is around late 40's. What I'm afraid of is seeing him may make me scared or depressed. I think I may be close to wheelchair time and that alone scares me to death as I am slowly losing my independence and I've always valued myself on my independence, so losing that has added to my depression.

I know everyone progresses differently and I keep telling myself that. But I just can't bring myself to meet him. I feel like I'm not being a good friend.