What? I don't understand the reaction. Do they appear revulsed? That doesn't make sense. I honestly wouldn't know what to say to someone who told me "I have MS" because I don't know that much about it. It would help me more if you said "I have MS, which means it's hard for me to walk without a cane. My leg hurts a bit, but otherwise I'm good." (I assume if it hurts A LOT that you'd stay home?) I'd affect a breezy, casual tone so they're not all "oh you poor thing."

I have a visible condition and people are usually too polite to ask, but if they do, I tell them in little words. Nobody has ever heard of my syndrome and they really don't care about medical terminology. Usually what they really want to know is 1) are you currently in pain; 2) is there something you need; 3) is this permanent or temporary; and sometimes 4) are you contagious. I would rather people ask than assume. People's discomfort bothers me more than actually talking about it, and I'll preemptively bring it up if I can sense someone wants to ask.

Kids are trickier; honestly I just tell most of them "God made me this way" even though I'm an atheist, because that completely satisfies every kid I've ever met.

My little boy does have a condition, I guess, or a disability. And it kills me to talk about it. I pretty much don't. Which is isolating. But right now, I just can't. All I can do is cry. Which I do, regularly. I greatly admire your attitude and courage and openness in being able to talk about your condition. Because I know it isn't easy. At least it isn't for me.

I asked a little bit similar, but nowhere near your magnitude. Some responders did have magnitude, and I appreciated it and am using it.

Oh Kangaroo, that sucks. My parents were constantly dealing with my medical condition up until around age 8, and it must have been exhausting. I hope you can find someone to talk to that understands what you're going through - whatever the condition is, there is a support group out there.

Is it possible that their look is from embarrassment rather than revulsion? I'd probably feel like an ass if it were me.

I think it's great that you're willing to answer honestly. Many people will feel awkward and won't know how to reply, but you're modeling an honest and straight-forward way of talking about it. If they're uncomfortable, it's not your "fault" or your issue to resolve!

What? I don't understand the reaction. Do they appear revulsed?

Some people just seem to want to end the conversation very quickly. I usually assume it's because they feel awkward, like they shouldn't have asked. I typically try to be breezy and kind of jokey about it (cuz what else can I do?), but I can't help but quote Monty Python in my head- "RUN AWAY! RUN AWAY!!".

Kangaroo, I can't even imagine how hard that must be. I work with a woman who's daughter has CHARGE syndrome, and just knowing what her day to day life entails breaks my heart for her. You are very strong to be able to handle this

Desjardins, the ironic thing is I work in a hospital, and I live in an area where MS is prevalent. You would think this wouldn't weird people out so much. The other bummer is, I am in a lot of pain, but working is what gets me out of bed each day, so until I absolutely can't work I keep going.

Related to the "god made me this way", that's another thing that sticks in my craw (although I totally understand why you say that to kids, what else can you say?) Some people take the opportunity to spout some bible crap about "god's will" and how I should pray for understanding "his" plan blah blah. I know they are trying to be helpful in their own way, but while I am not an atheist, I am also not a christian, and it just feels like biting on tin foil when they say that. I tell you I have a degenerative neurological disease and you tell me I've been chosen for suckitude?? WRONG ANSWER.

Rainbaby: good link! I have a form of rheumatoid arthritis too (basically, my immune system hates me) and I'll tell you, arthritis is far more painful than MS any day. I don't think "normal" people understand that part of why chronically ill people talk about their ailments so much is because it is such a huge part of your life and it's always stealing your attention. I don't know about you, but most of my day is taken up by medication, planning around my disability, dealing with pain or side effects, budgeting time so I don't run out of energy before the day is done, doctor's appointments, physical therapy, etc, etc, etc.

If people ask what is wrong and you have no problem telling them, I cannot see how the truth could be a breach of etiquette.

You know who's breaching etiquette? The people who are bluntly asking you "What's wrong?" instead of simply, "May I help you with anything?" or starting a conversation with "I've noticed you using a cane off and on over the last few months -- you don't have to tell me what's going on, but are you dealing with some persistent stuff?" That kind of talk puts the burden more on the asker instead of the responder. Because it is soooo not your duty to educate people.

If you've had RA and MS for any amount of time, you are probably quite familiar with this, but have you seen But You Don't Look Sick, aka the home of the "spoon theory"? It's almost become a cliche, but it's kind of helpful when you're trying to help people realize that you have a finite amount of energy at any given time and it can fluctuate.

I tend to be interested as I'm a doctor's kid and have lots of friends with MS, I tend to be all, cool, no worries, and if we are friends and get chatty about it in future I may go 'have you tried..' things, eg diet, stretches, cannabis, whatever if that seems welcome.

If I had the reaction you are talking about, it would be because I didn't know much about MS and had no idea what to say, and I'd be worried that I'd say something ignorant and offensive. Making a quick getaway would seem like a viable option. That's all. I can see how it might seem like a breach of etiquette; it's conversationally wrong-footing someone else. Which isn't to say that you shouldn't tell people, but that it would be best to throw them a line at the same time.

I've had depression for a long time. It's not in the same league as MS, but it's there gnawing away. Lots of people don't think depression is real, don't respect it, or even actively disrespect it. Out in the real world I feel like I can never, ever tell anyone about it, about how bad it gets. And I wouldn't want it to consume everything, anyway. So even though it's not the same, I think I understand something about what it's like to have this thing you are suffering from, that's not going away, that you're sort of never supposed to talk about.

My son was born with a syndactyly of his right hand. After four operations starting at 6 months of age (he's now seven), his hand still looks very 'different' and is also significantly smaller that his other hand.

If people ask me about it, I tell them briefly what happened. If they ask questions, I'm happy to answer them, explain the series of operations he's had and will continue to have until he stops growing etc. I figure the best way to combat people's fear of such things is by making people more aware. The more such conditions become common knowledge, the less people will be scared to be open about it.

I'm not sure why, but I never bring it up unless people ask, even if I can see they're dying to know. If they can't bring themselves to ask, they don't deserve the knowledge, I guess.

All this is to say - if they ask, tell them in plain terms. If they don't ask, to hell with them because they don't matter.

I have epilepsy, which has its own issues as sometimes my limitations come up and I have to explain them and people just completely don't get it because it's not an obvious disability.

People do make a lot of assumptions and I'm happy to talk about it, but there does come a point where I want to be left alone. Oddly, the biggest problem I have is with people who aren't familiar with seizures who want to help me somehow if I tell them I'm about to have one (I have auras, so I always know when a seizure is imminent). Thing is, there's nothing anyone can do to help. So what I end up doing is spending the time when my brain is literally shutting down trying to convince someone else that I'm ok in order to make them feel better. It's really frustrating. But at the same time, I understand completely that they simply don't understand what's going on and that they're trying to help me.

Anyhow, I sympathize. It's a really hard thing to talk about chronic conditions to people who aren't used to dealing with them personally. For me the best way I've found to deal with it is to be honest and understand that they mean well, but simply don't have any experience to draw on with this kind of thing. When it gets completely exhausting "I don't want to talk about it" is a perfectly valid response.

Madamina: I love the spoon theory! It's how I got my husband to understand why some days I couldn't cook AND do the dishes (to be fair, he does most of the cooking... but the dishes we're still working on)

Fleacircus: Never minimize the impact depression can have on someone. I hate the fact that people with depression are treated like they don't have anything "real" wrong with them. I used to have clinical depression for years, and it's devastating. Once I was diagnosed with ADD (which is possibly a side effect of the MS) and put on Adderall things got much better, so don't give up!

Grapefruitmoon: Yeah, the whole "hidden disability" aspect of neurological disorders is a blessing and a curse. On the one hand, you don't have a 3rd arm growing out of your face, so that's good. On the other hand, you are put in the situation of having to explain why you are limping, getting nasty looks for parking in a handicap spot even thought you have a tag, trying to reassure people you aren't 1. having a stroke, 2. drunk, 3. dying when something goes wrong.

I'm sorry to hear you have MS, and I hope it's under control.

People ask questions because they're outgoing, but they expect a casual answer and they don't know how to respond to the news that you have a serious illness.

Rather than, "I have MS" you could try "Sometimes the MS makes gravity stronger. It's weird how that happens, but I need a cane when it does." It assumes they know you have MS, so, conversationally, there's not a need to follow up, and it opens the door for a casual or jokey response about gravity or whatever.

You don't have to take responsibility for the rudeness of someone asking a personal question, but it's very nice of you to want to make it easier for others.

People don't understand MS very well, and they tend to think of Richard Pryor instead of people who continue to function, since people who continue to function don't show too many obvious signs of the disease. They also very, very frequently confuse it with muscular dystrophy. So they react as if you've just told them you have some immediately terminal wasting illness, and are horrified and stunned. Try telling someone you have to use the cane because your ankle is being eaten away by flesh-eating bacteria and see if the reaction is the same.