How do you explain MS to those who don't have it? How do you explain why you have so many limitations when they aren't always apparent and obvious?

The reason I'm asking is because of a comment someone made to me in an email. I haven't seen this person (a family member) in a long while so they aren't familiar with my daily struggles and limitations.

After I explained that I no longer work and am living on SSDI they wanted to know how they could "get on that gravy train".

I haven't responded and won't until I'm a little less offended. How can folks be so clueless? I really don't owe them or anyone else for that matter an explanation. But I always seem to have trouble describing my condition to those who aren't familiar with it. It would take all day to go over all the different sx I deal with.

There's not a lot of gravy on that train and without DH's income, I think things would be really hard. And I often don't feel great. Somebody once laughed as I ran into a wall getting out of a auditorium seat (before visible signs like crutches, walker, etc. I think he thought I was a drunk. Young DD was mortified and whispered "Mommy, that man is laughing at you" I taught her and her brother to think, never say out loud "He's an @$$hole and I'm not" Some people are just like that.

Well, first of all, I think you nailed it with the word "clueless". They are. I think most of us are clueless about other people's lives and struggles, though I would hope that most of us, MOST of the time, wouldn't say something hurtful in our cluelessness.

How to describe MS to an "outsider" has always been the $64,000 question, hasn't it? Multiply that by the factor of every MSer being different, and every outsider being different in comprehension...exponential.

A possible return email might begin something like: "I'm sure you didn't intend your comment to be hurtful to me, but I was taken aback by the thought that someone might think that a person with an incurable disabling disease could somehow be using it to get a free ride..." ..."If you'd really like to know how I got on that 'gravy train', I'd be glad to share some medical information about Multiple Sclerosis so you can decide for yourself if what I had to pay for the ticket is worth it...."

That made me cry. How incredibly offensive. I can't speak for every MS patient,but I am almost certain everyone of us would much rather have the 'work for our own money, I can do this on my own' ethic, but we don't have that as an option anymore.

I'm so sorry Kitty!

When I have to explain my disability to someone, I am usually pretty short and vague about it just because of them not being able to understand and I do NOT want to be judge or people thinking I am a hypochondriac. So it's a brief ' oh I experience alot of pain and can't walk somedays.' which sucks to say because I still get a raised eyebrow and the 'yeah i get pain too' look. What makes it even harder for me is my age. So explaining it to another 23 year old (or one in that age range) is very VERY difficult. I appreciate it when I briefly explain and the nice human people want to educate themselves more on it and want a better breakdown, but even then I don't like talking about it because reminiscing what I have experienced is somewhat depressing because I know that all those problems I just listed off will get worse over time...

So what I have found (that helps me feel more comfortable about it) is cracking jokes while explaining.. 'yeah sometimes I get these electrical shocks in my brain, or sometimes I'm walking and just fall over, I look like an alcoholic sometimes but I don't even drink, so I have a natural drunk all the time, It's healthier.' I know those aren't the best, but I find people don't really pry too much when I respond in that manner.

I really should be using a cane, I think there wouldn't be as much strain on my body all the time and I wouldn't have to pack in so much energy to just get my walk on, but I don't want people staring and judging me.

MS is a piece of you know what. But this disease makes people like us wiser, stronger, more compassionate and understanding. Doesn't seem like too many of us have that 'ignorance' thing going on.

Again, I am so VERY sorry to hear what that family member said to you, it literally broke my heart. Hang in there, we have this disease because we can handle it, that person that said that to you would NEVER be able to handle this MonSter.

Kelly - I'm sorry someone did that to you. I think it was wise of you not to respond right away, if at all. But, if you decide to respond, I would let them know what life is like for you having MS and not being able to work.

I find that people have a misconception about being disabled and not working. It is not like we can run around, have fun, and do what ever we want. That is not our reality. Reality is, our bodies are dictating what we can and cannot do on a daily basis. I personally would much rather being working a full-time job then sitting thinking, "Dang it all! I'm too tired to get up and go to the bathroom." or "I can't walk to the mailbox today to get the mail" or "I really want to go to the grocery store but can't manage driving a car today."

There are website links you could send them including the SSA website about how they determine if you are disabled. And, you can be a smart ask and have them go through all of that to find a disability to get them on the "gravy train." Which, btw, it is not a gravy train when you have Medicare premiums, medications to purchase, and co-pays to pay, and things like that. There is very little "gravy" left for bills after all that. Of course, once you explain to them that they have to have their drs. support in applying and all that they may have to go through to get SSDI (denials, appeals, independent medical evaluations, appearing before a disability judge, etc.) they may not think it is worth it as they have no supporting documentation to back up their claim.

You could send them the Spoon Theory and alter it to relate to your life and what you have to deal with.

But, all in all, I think this persons comments and stuff were just rude and they don't need an explanation from you or anything. Just a simple, thanks for your concern but I don't like to discuss my disability, might be enough.

For most people, I send them Christine Miserandino's Spoon Theory about Lupus. I tell them my sypmtoms are a little different but the idea is really the same. It is really a compassionate explanation and invokes an understanding of those that want to respond. Lupus and MS share sx's.

http://www.butyoudontlooksick.com/ar...e-miserandino/

The idiot was probably just breaking the silence with a little humor and didn't mean it, the way you took it..?

Let's hope he/she wasn't cruel enough to spout that off in earnest.

Sally, it's a cousin that I haven't seen in years and years. I've decided that I'm not even going to reply to her. It's not worth the energy.

I might send her the link that Cyn suggested. What I'd really like to tell her is that the "gravy train" I'm on is a one way ticket...with no stops. And no refunds.

I guess if you're in the rat race every day then being able to stay home might sound appealing.....for a minute.....but there are "conditions" to this that aren't so great.

Tell me about it..

Can I borrow this? This is an excellent and concise response to anyone who seems to think your disability, whatever that be, is the same as vacation!