Understanding

A forum dedicated to the younger people living with MS reflecting their unique concerns.

Understanding

Postby titanicstar » Thu Nov 06, 2008 10:45 pm

Hello All, I am having a hard time explaining to my friends and family what MS is like. They nod like they understand but you can tell on their faces and how they change the topic quickly. You would think that living in the city that I do I would find someone else that has MS or atleast a support group. But alas I have yet. I am just very alone. I know my family and friends love me and want what is best for me I just don't think they want to understand it all. Did anyone else have these issues. If you did what did you do?
thanks
JM
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Postby oreo » Sat Nov 08, 2008 6:46 pm

With a lot of people, if they cannot 'see' the disease it is almost as if they don't believe you have it. 'If you are not in a wheelchair, you cannot possibly have MS.'

Unlike some other diseases which have clear and consistent symptoms from one person to the next, MS is highly variable which leads some people to believe its mostly in our heads. Well, actually it is, but I think you know what I mean.

Then there is the issue of the other person they know of who has MS and you don't match that person's profile, therefore you really don't have MS.

The first time you fall flat on your face for no good reason in front of them, their attitudes might change.
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Re: Understanding

Postby NHE » Sun Nov 09, 2008 2:05 am

titanicstart wrote:Hello All, I am having a hard time explaining to my friends and family what MS is like.

Sometimes I use real world analogies especially to describe my neuropathic pain. For example, early on after my diagnosis I told a couple of people that it's like waking up everyday and finding out that some S.O.B. has put nettles into my sock and that they always seem to be able to pick out the one I'm going to put on my right foot. For folks in other parts of the world, nettles are a common weed in my area which are covered with fine bristles that cause intense skin irritation and burning. More recently, I've described the neuropathic pain as though it was like having my foot wrapped in hot, coarse sand paper. In any case, these analogies give the other person a readily available visualization tool. One word of caution though, for your own peace of mind, try not to get caught up on your specific analogy. Obsessing on the visualization will often make the pain more focused. Clearly, that's not a desirable end product. Still, they serve as a useful tool when communicating to people who otherwise can't see anything wrong.

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Postby superman » Sun Nov 16, 2008 6:28 am

For the first years of my MS, I often used to speak out about it to relatives or friends.
This tend people to see me just as a sick guy.
Since that i prefer to not speak about it, unless i have serious problems: relapse eg.
Also, i have a very limited list of people to speak about it.

Otherwise, if you want to explain MS, just say neurological system is like an electric one, and that ms hurts connexions between your brain and your body, which can cause disfunctions in any part of your body.
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Postby mattalleng » Sun Sep 12, 2010 11:28 pm

So a lot of my family and friends did not know about MS till I told them what it was, in fact I never knew about it till I did my own research after I thought I might have it... Only time I had ever heard the term was on that TV show "House" LOL.

Anyways, I decided to write an article on my blog that would help explain to people with little to no medical knowledge what the disease is. I'm posting a link for you, you can check it out and if you like it maybe it will help you explain what MS is. You can even just send them a link and let them read it on their own.

http://mattsms.blogspot.com/2010/09/so- ... rosis.html

As someone mentioned above, people are afraid of what they can't see, it's human nature... I think the best and only thing you can do is just talk to them about your progress and how you feel. Give them something to see and don't bank on falling flat on your face LOL, not a pleasant way to get the point across though it will probably do the trick... I know this sucks, but honestly this is when you find out who your real friends are... Good luck!


Also, on my blog you will find a link to my facebook along with my e-mail address, feel free to hit me up anytime!

http://mattsms.blogspot.com/
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Postby emaugust » Sat Jun 04, 2011 11:47 pm

When I have been explaining MS to people, there are a few things I have been doing. While I realize that MS can be very serious potentially, I try to downplay the severity - I want everyone to know that I am a normal dude who sometimes gets real numb or cant walk real good. I'm still me, ya know?

So here are a few of my strategies:

1. I compare MS to diabetes because most people understand diabetes. I tell people that MS is chronic but treatable and just something that you need to stay on top of. This seems to help people understand and, for my purposes, freak out quite a bit less. This is good.

2. For my particular case, if people start treating me different, I remind them that I have effectively had MS for 10 years now even though I was only diagnosed recently. They didn't treat me differently then, so why are they gonna treat me different now? Same guy!

3. For explaining what specifically MS is, I just keep it simple - I tell them that my immune system gets confused and tries to eat my nerves. This is what causes all of the fun numbness, vision problems, bladder problems and so on. Once again, people seem to understand these simple explanations.

Obviously if someone is more interested, I am happy to get into it - but keeping things simple and easy to relate with seems to be the best way to help people understand. Mostly we talk about this stuff with our family and friends and they care about us. They may want to *understand* our condition, but what I think they truly want is simple reassurance that we will be OK, and that is what I try to provide.
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Re: Understanding

Postby MsMezza » Thu Sep 08, 2011 2:19 am

It is difficult for a non-MSer to understand the effects that MS bestows upon us. Try and explain as much as you can, but don't stress yourself worrying about it because it'll only negatively affect your body.
Try and explain it in simple terms, this is what I used to explain to my family/friends (don't laugh :P).

1. Brain fog feels as though my brain is wrapped in cotton wool and no thoughts can enter my brain because it's already occupied by the wool.
2. Chronic fatigue feels as though my body is about to shut down at any minute and I can no longer process a thought and I must sleep now now.. NOW!!
3. Numbness and tingling is like having pins and needles - but for weeks and much more irritating.
4. My speech isn't perfect because it feels as though my tongue is too big for my mouth.
5. Please understand if I tell you to be quiet during a conversation - I can no longer process what you are saying to me.
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Re: Understanding

Postby Grenaway10 » Sun Nov 06, 2011 4:29 am

titanicstar wrote:Hello All, I am having a hard time explaining to my friends and family what MS is like. They nod like they understand but you can tell on their faces and how they change the topic quickly. You would think that living in the city that I do I would find someone else that has MS or atleast a support group. But alas I have yet. I am just very alone. I know my family and friends love me and want what is best for me I just don't think they want to understand it all. Did anyone else have these issues. If you did what did you do?
thanks
JM


my family has that problem of understanding what i am going through they dont even see anything wrong with me until i start walking funny or they see me looking at things weird cause my eyes are blury lol its like a$$wholes i am not getting any better soo try to remember that i am sick and stress is not good, and dont try to understand just support us to try to live a comfortable (family stress-free )life cause just like eveyone else that is not sick life is stressful so we dont need the extra SH!*(sorry for my lag)

Racine :smile:
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