As my husband was helping me at my daughter's graduation yesterday, people were concerned. I think they thought I was fainting (it was very hot), so they wanted to bring me a chair, a glass of water, etc. We were just trying to get to the car, and I tend to go limp, so I'm a sight. What's the best simple explanation to people in passing? I usually say things like, "I have a muscle disorder." If the person stops to talk, or if it's someone I know, I might say, "I have a neuromuscular disease, myasthenia gravis. It's sort of like MS." Yesterday at one point I heard myself say, "Oh no, I'm fine, I'm always like this," which was probably not the best choice.

What's your favorite very brief explanation?

Abby

I've never had that happen! LOL If anything, people AVOIDED me--probably because I looked drunk or drugged. People must be nicer where you live!

Now there have been times when I have been at social events with people I didn't really know, and my voice would tend to "give out" after 5-10 words. I would always tell my hub before we went to the party to "step in and explain" if that happened, as I literally would not be able to speak.

I think a few times I told people "I'm a Jerry's kid" to diffuse the looks before anyone could avoid or ask if I needed help. Usually that would bring some intelligent questions, and often a story of the person "they once knew...."

I think having your helper explain would be a great plan, and you could save your energy for trying to "escape" with as much dignity as possible.

MG sure keeps you guessing, doesn't it?

Abby! My favourite brief explanation is "all of the above!" This is an interesting topic. I think you are very perceptive. In social situations, "brief" is exactly what people are looking for, unless, as you said, a person stops to talk, and even then, your answer was right on!

Social situations are not the time and place to speak, in-depth, about conditions. That's reserved for one-on-one coffee, or when others pursue the conversation.

When someone asks if we need help, it's really important to smile (if we can... ) and to thank people for asking. You'd be surprised at how many people aren't sure if they should step in and help.

Abby, I am so sorry that happened to you and at your daughter graduation!! The heat really did me in yesterday too. I tell people "I have a neuromuscular disease like MS". I leave Myasthenia gravis out of it with strangers because I just get this puzzled look and usually the comment " I never heard of that"

kathie

People get confused because my MG is so very, very fluctuating. If I were always as weak as I am during a weak spell, I would need a wheelchair all the time. If you're out in public and see a woman who can't really walk, but she has no devices to assist her, you assume she has something acute rather than something chronic.

I brought my zero-gravity recliner to the graduation because my back, shoulder, and neck muscles get tired if I have to sit for a long time in a straight chair. Someone asked me if I had just had back surgery. By the way, this is a wonderful, wonderful chair! Highly recommended for anyone with back or neck weakness. Good for any outdoor sitting, like a Little League game or a trip to the park or beach. It folds up, but it's heavier than a regular lawn chair--too heavy for me to carry far by myself.

Re: Jerry's kids: I grew up without a television (and don't have one now), so if someone said that to me, I wouldn't know what it meant. Google to the rescue tells me it's a MDA telethon thing. My question: is this a phrase any normal American would recognize immediately? If so, I think it could be very useful shorthand. I'm not sure if people know what "neuromuscular" means.

Thanks, everyone. It was 95 degrees at the graduation, and I ended up sitting in the full sun. I tolerate the heat better than most myasthenics, but evidently I have my limits--or maybe it was just the exhaustion of the trip (and the energy expenditure of getting all my little boys to look presentable!).

Abby

Yes, "Jerry's kid" is quite well known, but will become less so as Jerry Lewis has stopped his work with MDA. The day I was diagnosed, I was sitting in the office at the neuro's, making my first follow up appt and began crying, and when I could finally get my voice again, the first thing I said was, "I'm a Jerry's kid." Crazy what you remember, huh?

Abby,

During the four years I've battled MG and SPS, I have never had a stranger ask what is my problem but I do get alot of stares. I have to walk with a walker and my husband stays close by even to the point that when I am in public and need to go to the restroom he has to help with the restroom door and stands outside the restroom waiting for me. I'm sure people think it's pretty strange for a man to hang out at the ladies restroom but all he cares about is my safety. He's been a blessing throughout this ordeal.

I know most people probably think I've had a stroke and I am amazed how nice people are to hold doors for me or let me go first through a doorway. I never realized how kind people can be until this happened.

Should someone ask I would just say that I have two rare autoimmune illnesses and leave it at that. It's very hard to explain what is or has happened to your body. I truly don't understand it all.

Southern Bell

Great question! Happens to me a lot! Which is why I get frustrated when people complain when someone says, "But you don't look sick!" I WANT TO NOT LOOK SICK DAMMIT!

Abby, I totally understand where you're coming from...guess we all do..
I've used "I have a muscle wasting disease like muscular dystrophy", most ppl know 'bout MD & might understand us better ..very hard to explain MG or "neuromuscular"....or one might just say "my muscles don't work properly"...I'm glad you have a wonderful, understanding husband on your side..

It's been necessary for me to use an electric cart when in large places, airports esp, shopping etc...still can walk very short distance with a cane on some days, but the weakness is getting worse & boy how I hate that cart...but, if I try to walk it, my dyspnea gets worse & I can't breathe.... & then I've found that some ppl will try to help, if reaching for something on a top shelf or carrying heavy bags....they just don't want to interfere I think.....it's very disconcerting to be in this position in need of assistance & also reluctant to use it...
Tracy, I couldn't agree more....

Dottie

Hello Dottie Other than MG, do you have another diagnosis?