Disclosure & Other People's Sympathy

[Cira]

Does telling others about your MS ever get any easier? I've chosen to be fairly open with the people in my life about my MS. I don't regret it & for the most part, everyone has been wonderful. Even the few who said something stupid had good intentions. But I still find it hard to disclose initially.

I also find it hard to deal with the sympathy. I recently told one of my instructors at school because I had to take an incomplete in her class last term & I needed her help getting back on track with finishing up the course. I figured if she knew my situation, it would make it easier to work something out, so I told her briefly about my diagnosis. She was incredibly kind, understanding & helpful. I couldn't have asked for a better or more supportive reaction.

Yet....Part of me wanted to shrink away from her kindness and the obvious sympathy behind it. Every time I encounter the inevitable sympathy, I feel almost queasy & I can feel the anxiety rising inside me. I don't quite know why.... Maybe it drives home the reality of it all? I know that it is totally me- not them or their reactions- but I don't know what my problem is. Does it ever get any easier to tell people that you have a chronic illness?

[22cyclist]

When I was first diagnosed and told people and they reacted that way, I felt pressure then to make them feel better by saying, but I am OK. I am doing OK. Now that I am older and wiser, if they ask me what MS does to me I lay it on them. Usually they are shocked and don't know what to say so that takes care of that. (I leave out the self-cathing part). If they respond nicely I just say "thank you". Their feelings are theirs.

You can't feel guilty for others feeling badly for you. I know you are not looking for sympathy, and you can say that, say "I am just trying to have you understand my situation, not feel bad for me".

Ask them if they have any questions about the disease.

Just don't feel guilty or bad about their response.

Take care
Lisa
Moderation Team

[Cira]

You're right, there is definitely some guilt even though there shouldn't be. I have come right out & told many people that I want them to know about the MS so that they understand but that I do not want pity. People close to me have been fantastic about that- and again, no one has reacted negatively. It is purely a matter of my reaction. Like you, I also welcome questions and TRY to resist the urge to minimize the effects MS has had. It is sort of a reflex to assure people that I'm ok, but I do try to lay it out for them just as you do. (Thanks for the laugh about the self-cathing, btw)

The more I think about it, the more I think that maybe part of my problem with telling people & watching their reaction is that I am not comfortable with this diagnosis. I'm not used to being "sick". If anything, I've always been the caretaker. Maybe a big part of the problem is my acceptance.

[Thinkimjob]

I think I've worked out why talking about MS and how you feel to people you know is so hard. (Including doctors.)

Maybe it's because we (Royal we there) want someone to "fix it" and make it all better, and the people we tell would if they could. So it's sort of a Mexican stand-off. They can't make it any better, so we pretend it's not as bad as it is.

And our bluff and hearty act doesn't make it any easier for them, or us. It's very tiring pretending to feel great when you feel awful, and it must be hard for them when we put up the , "I'm fine, don't talk about it please, "barriers.

Probably better to just say straight, "yes, I feel pretty rough, yes, I hate being sick, but there's bugger-all we can do about it, and I'm just trying to make the best of it. So can we talk about something else?"

[Debby]

When it's necessary to tell someone, I do it in a very matter-of-fact, non-emotional, factual way. People seem to respond to my attitude with relief...like if I'm not having a pity party, then they don't have to gush out the "I'm so sorry's" and all that.

So far it has worked for me. It helps, in my life, for certain people to know. If I'm having a bad day, show up but am not feeling well, or can't show up at all - they GET it, without any need for me to launch into an extensive explanation.

[naphappy]

I feel it is the "unknown" again feeling when I am in a situation the ms MS comes up.

Friends at work and otherwise know me enough to ask if I need something and then respect if I say yes or no.

I teach primary aged children in a very large, sprawling building. If I need to carry something or "run" back and forth from one end to the other, most are quick to offer help. If I need it, I will take their class for a few minutes while they take care of my needs.

They usually say something like, "how are you doing? or do you want me to...", and then we exchange a favor.

Over the years, they seem to understand that sometimes I am doing fine and other times I am not. So they just do a quick gauge.

It is the new situations that make me anxious. Sometimes, it feels like if we disclose we are giving a little bit of ourselves and our control away again.

I think subconsciously we hanging on to our independence with tight fists and do not want to open ourselves up to the possibility that we are vunerable.

I struggle with emotional toll sometimes as much as the physical aspects.

Just my 2 cents worth drawing on psychology classes of long ago.

[kebsa]

i am in a wheelchair and have a leg missing, so my MS is not necessarily visible to others but i do need some accommodation in the work place so i have to disclose to my employer, maybe also m working back ground helps to as i am an RN- if i do disclose i just do it in a very relaxed manner and do not make a big deal of it. sometimes i will get someone ask questions , perhaps because they know someone else with MS but don't really understand it- if thats the case its nurse hat on and an exlantion of how it can very so much from person to person, how it often is not visble to others etc etc but there have been situations wher i would not have felt so comfy telling people and then if they want to assume i am in the chair because i am missing a leg, that can be handy too!

generally speaking i do not care if others know but i really do not want others to start treating me like i am helpless- if that happens then its a polite lesson on how to deal with people with disabilities and how not too, regardless of the actual condition

[Whimpurr]

i am in a wheelchair and have a leg missing, so my MS is not necessarily visible to others but i do need some accommodation in the work place so i have to disclose to my employer, maybe also m working back ground helps to as i am an RN- if i do disclose i just do it in a very relaxed manner and do not make a big deal of it. sometimes i will get someone ask questions , perhaps because they know someone else with MS but don't really understand it- if thats the case its nurse hat on and an exlantion of how it can very so much from person to person, how it often is not visble to others etc etc but there have been situations wher i would not have felt so comfy telling people and then if they want to assume i am in the chair because i am missing a leg, that can be handy too!

generally speaking i do not care if others know but i really do not want others to start treating me like i am helpless- if that happens then its a polite lesson on how to deal with people with disabilities and how not too, regardless of the actual condition

I get what you are saying about being in a wheelchair and missing a leg! I think many people unknowingly seem to assume that because our bodies might be disabled, that it automatically means our minds are as well!