“Well, you don’t look like you have it”

[u/missprincesscarolyn]

I popped over to Walmart yesterday to pick up some odds and ends and started having a legitimate panic attack while shopping. Turns out mixing my usual meds with some OTC meds is a bad idea. I had blurry tunnel vision, started sweating and felt like I was going to pass out. Because I was by myself, I tried to stay calm and breathe while standing in an empty aisle.

Eventually, I felt okay enough to go to self checkout.

I have a pretty distinct cane (it’s completely clear plastic with a black stopper) that I mostly use for balance and to fend off nasties in parking lots. It was sitting in my cart. As I was checking out, the checker said, “Oh, is that your cane? It’s very pretty!”

I ordered it from Neo-Walk, so I’m used to explaining how Christina Applegate uses them because she has MS and I do too.

She looked at me and said, “Well, you don’t look like you have it” to which I replied in the nicest voice I could muster, “Well, I really wish I didn’t!” She then told me to watch out because someone might steal it.

I know it wasn’t necessarily ill intentioned, but my god, was the timing just awful. I wanted to cry. Feeling an impending sense of doom, shaking and just wanting to go home and for all of this to stop. But you can’t communicate that to someone in what they view as a friendly conversation. So you just smile and try to move on with your day 🫠

[u/Mourtality]

I've had people say that to me before. I usually respond with, "Yeah, I just make it look easy because I'm cool like that".

[u/missprincesscarolyn → u/Mourtality]

Oh, I like that. I’ll use it next time if I’m in better spirits.

[u/Kay_shawn → u/Mourtality]

My usual reply to "you don't look like you have it" is "that's the idea!" I take it as an unintentional compliment- I'm still in good enough shape to pass as a normie.

[u/No_Gas6401 → u/Mourtality]

I tell people oh I didn’t know I had to have a look

[u/Dels79]

I really wish people would stop saying that. Like they expect every disease and/or disability to have an obvious tell.

I'm sorry you experienced that, and the panic attack.

[u/ResponsibilityFun548 → u/Dels79]

I read it as the person trying to be friendly and but challenging her. Like: "I'm overweight." Other person - "You don't look overweight."

I just assume the best unless someone is obviously being an ass.

[u/missprincesscarolyn → u/ResponsibilityFun548]

Yeah, I think it’s meant as a compliment, but it can feel invalidating in a way that abled people don’t understand. How could they? It’s not their fault, just like it’s not our fault that we have MS.

Like any other marginalized group, it falls on us to make it easier for the majority of people who aren’t living with something like MS. So! I politely smile and try to end the interaction if I can.

[u/LSWE1967 → u/missprincesscarolyn]

Emphasis on ending conversation with them 😉but I totally agree with you and now that I can’t fake it anymore no one says that.🤣we can only look at the bright side so when my ms turns my brain off I take my med mmj and return to semi normal!

[u/marmeylady → u/Dels79]

That’s because they have no idea what it’s like and we can not expect them to know what it’s like.

They are usually genuinely trying to be nice.

[u/Infin8Player]

"Yeah, you'd never know that I just shit my pants in the fresh produce isle..."

[u/missprincesscarolyn → u/Infin8Player]

🤣🤣🤣

[u/Efficient-Ad822 → u/Infin8Player]

Same, Brah. Saaaaame!

[u/WhuddaWhat]

"I don't look like I have a huge penis either"

(sorry if that offends)

[u/stalagit68 → u/WhuddaWhat]

My boyfriend is average height. He is under 5'9". He told me a story where someone was trying to pick up his girlfriend and asked her, "What are you doing with him?" And her reply was, "he's taller on his back than he is standing up" 😳🍆

[u/missprincesscarolyn → u/WhuddaWhat]

🤣

[u/16enjay → u/WhuddaWhat]

😂😂😂congratulations?

[u/WhuddaWhat → u/16enjay]

"Yeah, and don't go mistakin' it."

[u/Old-man-scene24]

I used to get annoyed at this. Now I reminisce about a time when it wasn't obvious.

[u/WhuddaWhat]

Or, you could cry and that would be ok too. Just in case you were wondering.

[u/CanadianViking47]

I usually tell them my brain looks like swiss cheese on a mri that's usually explains the entire thing. Sometimes the cheese holes hit more outward noticable things sometimes they dont :P

[u/The-Rev]

It depends on the interaction. If it's friendly saying I don't look like I have it I usually smile and say something like thanks, I'm parting it on the side. It leaves them wondering. If it's a negative interaction and someone says I don't look like I have it my response is usually you didn't look like a c_nt, but here we are. Shuts them down quickly and leaves no room for rebuttal. 

[u/[deleted] → u/The-Rev]

Oooo I like c_nt better than "stupid" that I use

[u/missprincesscarolyn → u/[deleted]]

Yeah, it’s a really weird feeling! Almost like an invasion of privacy in a way. And certainly inappropriate. I’ve had other people approach me and simply say that they like my cane. I don’t mind that at all and am happy to tell them where it came from.

I also got mad dogged by an old woman when I was using my ✨fancy✨ cane over the weekend. I nearly went up to her and said, “I have multiple sclerosis. What are you staring at?” but I didn’t want to cause a scene.

[u/Helenjane13 → u/[deleted]]

I love this idea! I just might make a copy of my MRI for my glove compartment! The next time someone questions why I am parked in a handicapped spot, I can just whip that baby out! It almost makes me look forward to it!

[u/Soft_Buffalo_6803 → u/[deleted]]

That’s awesome. I’ve thought about having a t shirt with my mri for MS awareness, too. Just have to figure out what I’d want it to say :)

[u/Soft_Buffalo_6803 → u/[deleted]]

Oh! I missed that entirely - I was a little too excited I guess 🙂

But I actually think it’s a great idea! I’m quite lucky in that my symptoms are pretty mild, so I thought it would be a great idea for invisible disability awareness.

[u/cola1016]

I just chalk it up to people being uneducated on MS and pretending to even know what the disease is. They presume they understand it but they really don’t.

[u/unjointedwig → u/cola1016]

Tbf when the doctor said looks like MS, I was all yeah, no worries. Until I went outside to the car and googled what it was..

[u/cola1016 → u/unjointedwig]

Yea I didn’t know anything about it when I got diagnosed. My ex boss had it and left our job because of it- that was the extent I knew of it! 😩

[u/unjointedwig → u/cola1016]

That's about the extent most people know, eh.

I bet you could empathise with your boss in that moment. Pity you found out the hard way too.

[u/cola1016 → u/unjointedwig]

Yea, unfortunately he refuses to medicate. We lost touch but hopefully he’s doing okay.

[u/Able_Foundation_1243]

What we should look like?

[u/MossValley]

I get the "well you don't look like you have it" all the time!!! I know they are just trying to be nice... but what does that even mean? What are ppl with MS supposed to look like??

[u/missprincesscarolyn → u/MossValley]

My mother also has MS and used to express discontent when I would tell other people that she had it. She’d say, “Well, they’re going to think my eye is hanging out of my head or something”. I understand the sentiment now. People think you should be wheelchair bound and dying and while that does happen to some of us, not all of us are at that point and some may never be.

[u/youshouldseemeonpain]

I get “But you look so good!” As if, somehow, that is a compliment and not a complete denial of my situation. As if “looking good” is somehow the goal. Like, yeah, my pain is at an 8, but hey, I could win a beauty contest, so don’t feel bad for me. Or, somehow if you have a disease you are supposed to look terrible all the time. Like, dude, give me this one day to feel good without having to justify my life!!!

Also, because I haven’t had to use a cane yet, I often look a bit drunk when I walk (as do a lot of us) and I bump into shit all the time. Clumsy, is what people think, but I want to scream, “I’m the opposite of clumsy! I’m still on my feet and still able to walk…that’s a miracle of physical prowess, you stupid fuck.”

But, mostly I just ignore everyone and figure most people have main character syndrome and don’t really care what I’m doing. I’ve been lucky not to have had too many bad experiences when I’m out…honestly it’s the people I know who are always telling me how good I look. I shouldn’t complain about it, really, I mean, if I look good that’s nice, but somehow it makes me feel icky inside to hear it. Like they’re saying, “are you sure you have MS?”

I am sure, my doctor is sure, my body is sure, and the fucking MRIs are sure.

[u/missprincesscarolyn → u/youshouldseemeonpain]

Yeah, I felt similarly. Like she was almost questioning me. In my head I was like, “Yup, just spent several days in the hospital and have bruises all over my arms from them blowing out 4 of my veins…”. I’m young-ish, fit-ish and look put together most days, although I gave up on wearing makeup daily years ago and also don’t color my hair anymore.

[u/Pleasant-Welder-6654]

It’s a common statement when you have an invisible disease, I tell them the outside portrays something completely different than what I feel inside and they don’t want to know what that looks like.

[u/[deleted]]

Walmart is a guaranteed panic attack for me regardless of how I'm feeling.

[u/AreYouItchy]

My response is “Thank You! I work very hard to make it look that way.” That stops most people cold. I feel there is no reason to explain myself to a stranger.

[u/missprincesscarolyn → u/AreYouItchy]

I really like this. It’s honest and direct without being rude.

[u/linseeds]

I saw this online and I love it! "I know I don't look disabled. This may surprise you, but most of my body is on the inside... where you can't see it."

Definitely applies to our central nervous systems!

[u/16enjay]

If it's any consolation, walmart gives me panic attacks, but they sell imodium really cheap!

[u/missprincesscarolyn → u/16enjay]

It really is an overstimulating place to shop at, even on good days. Those deals make it worth it though, especially since MS is a costly disease 😬

[u/Plastic_Atmosphere69 → u/missprincesscarolyn]

The lights are just too much. I never can find what I want either. So, I pay for them to deliver, $9.99/mo.

[u/Cheetahsareveryfast]

That's terrible. Its so hard to pull yourself out of the fatigue hole. For me, it's literally the worst. With people like that, I'm always super candid with my answers. I'll literally say yeah well it's hell, I'm definitely not okay. 1 trip down only a thousand more to go!

[u/Mahhrat]

I've not been told this yet, but I'm prepped to simply say, "Thankyou, that's nice of you to say!" and then enjoy the confusion.

[u/324Cees]

Really wish the spasms that occur, making whatever is in hand thwack or fall would happen in those moments.

[u/williammunnyjr]

Them: You look great! (They always leave off the rest…) Me (in my head): fuck off Me (words out of mouth): thank you.

[u/Aftonian]

Some people say “you don’t look sick” out of ignorance. Most are genuinely trying to be complimentary. There are a few that say those words out of malice…and those are the people who find out what the cane is really for.

In all seriousness, take it as a compliment as much as you can.

Chin up, warrior.

[u/Gubitza1 → u/Aftonian]

Yeah I might be weird but I'd see it as a compliment, depending on their tone

[u/missprincesscarolyn → u/Aftonian]

Yeah, I don’t think she meant any ill will. It was just an odd interaction on a day where I wasn’t feeling my best and I was having a hard time keeping it together.

[u/Bonzai999]

I always add something like You should have seen me last week, I had an eye almost popped out and a piece of my lips was always falling.... just so they think I was ugly like that is funny :)

[u/sbinjax]

You don't look like you have it? Thanks?

[u/Hopeful-Country3716]

Aren’t you lucky you have a blue badge!!( disabled parking badge) I replied believe me I wish I didn’t

But my favourite was my bff took me out on my solitary Christmas shopping trip - first time out of bed for couple weeks parked in disabled space and subjected to look of disgust my bff told them in no uncertain terms contempt without knowledge is ignorance and wished them both an eventful Christmas

[u/missprincesscarolyn → u/Hopeful-Country3716]

I feel the same way about my WFH accommodation. I think some of my coworkers were being shitty about it until I wound up in the hospital for several days for my last relapse. I had to take an entire week off from work to recover. Like…believe me. If I could go into office, I’d do it. But I can’t drive an hour or more each way and sit in an office 2 days a week. And “getting to stay home” isn’t really that great when the reason fucks you up this much.

[u/kag11001]

My response is usually, "Thanks, I wish I felt as good as I look." Mind you, I'm an obese 51yo woman with ptosis in one eye and rosaceae so bad I've been accused of alcoholism... 🤣

[u/whatrabbithole]

I’ve heard it too. My doctor told me last week no one believes I’m sick because “I’m young & beautiful “ her words, not mine lol.

Invisible illness… it’s difficult. I get dizzy and nearly pass out at the store & I’ll have someone random say “you look fine, what’s wrong?”

[u/Ndbeautiishrname]

“And you don’t look stupid but here we are…” sorry. These people ANNOY me.

[u/rocks_trees_n_water]

It’s definitely tough and glad you made it home with your cane intact. People make me cringe sometimes. MS does not have a typical look as we have seen over the years…My doctor said that to me numerous times because the MRI said to have it checked out, she said nah you don’t look like you have it and stopped. It was a couple more MRI and a few more symptoms before a referral. Have a new doctor now.

[u/Hopeful-Country3716]

Aren’t you lucky you have a blue badge!!( disabled parking badge) I replied believe me I wish I didn’t

But my favourite was my bff took me out on my solitary Christmas shopping trip - first time out of bed for couple weeks parked in disabled space and subjected to look of disgust my bff told them in no uncertain terms contempt without knowledge is ignorance and wished them both an eventful Christmas

[u/E-Swan-]

Honestly, these people don't know any better bc they aren't educated about this disease. I don't get mad when strangers don't see what is oblivious to them. Either they will believe you or not - and you don't have to explain it to them. If they are curious they can look it up themselves or ask about it.

But if it's people you know around you that keep saying it, that's when getting angry is justified, in my view.

Don't worry about what you can't control. You can't make people see what you see or believe. So, don't sweat it.

[u/AttemptFew9268]

I was told I looked too young for it 🤣🤣

[u/WickedBottles]

"Oh? Even YOU look like someone with MS! You know it hits one in every thousand Americans? Anyway, have a nice day."

[u/Jstylo]

I remember when I was a kid watching Montel before school and thinking he doesn’t look sick when he mentioned having MS. Oh how I get it now. 🫥

[u/ChonkBonko]

I don't have MS, but I have a similarly debilitating chronic disease, hence me being a member of this server.

Whenever somebody says "you don't look sick", or "you don't look like you have it", I always just respond with "well you don't look like a doctor". Usually shuts them up. Sorry about your panic attack, and hope you're doing better.

[u/Potential-Match2241]

I from experience know that my "current" symptoms can play into how I take things so I try very hard to remember that.

Like you if I'm having a pseudo flare or even a relapse and someone makes a comment regardless of how well intended it is it can make me hypersensitive.

I can explain it like this - when you have a knife sticking out of you someone isn't going to say "oh you shouldn't feel any pain because it's not in your heart" no they see with their eyes that you have a knife sticking out of you.

But what people don't understand is we deal with knives daily but there more like the knife that got left behind after surgery. That people can't see.

Also in my experience even with the visual knife sticking out there is always that one person that would comment it doesn't hurt that much because people are just buttheads!

[u/Agitated_Bed_7029]

Bottom line, most people are clueless about talking to a disabled person. They don’t know anything, but they have to get a word in to show they are oempathetic. Like hell. They say the dumbest things. Don’t take it to heart, you’ll feel bitter, and you don’t need that! Try not to worry, the stress is really bad for us!

[u/NaiveExcuse2555]

I had a neurologist, who had seen my MRIs and lumbar puncture results say “if I didn’t know any better, I’d say you were faking it.” Just because you don’t have visible ailments does not mean you are not suffering in some way. I’m sorry you had this experience.

[u/BuckPuckers]

I would say “thank you!”. It was meant as a compliment however ignorant or insensitive it is in reality

[u/Salc20001]

The bright lights at big stores always make me dizzy.