When you have an invisible illness, it is extremely frustrating to pour your heart out to someone and say how much you are struggling with this or that or this, and they say, “But you look so good.” That is my number one pet peeve, because I may look good on the outside, but the inside is the absolute opposite. And I also get very frustrated with people who say, “Oh, my friend tried this, and it absolutely cured them.” And it’s difficult to go back and remind them, “Well, there is no cure for this, and so thank you for the advice, but yeah that’s not going to work.” So it is frustrating for people who, not that they don’t understand it but that won’t understand it, and that I give them facts, and yet they come out with, “But this, but this, but this.” Sometimes it’s the best thing to do for a patient is to listen and not offer advice or cures or a boost to my ego in my appearance.

Usually, talk of my multiple sclerosis is quite positive. However, some people do mention, “Oh, you’re going to end up in a wheelchair,” or something like that. That’s annoying, that’s not necessarily the case. That’s not necessarily the case for many patients with multiple sclerosis. But it’s difficult to try to educate people without seeming pushy. But at the same time, people tend to speak their minds or give their two cents worth, when they really don’t know enough to be sharing their own information with it. You can’t cure multiple sclerosis with a diet or things like that. So it’s just frustrating.

That’s a tough one because a lot of people expect people who are disabled to be in a wheelchair, but MS is an invisible disease because MS is in your brain. The fact that I’m walking and not in a wheelchair yet makes me, I think, too healthy, I guess. People will say, “Well, you’re too young. You’re too young to have MS. You’re too healthy to have MS.” They don’t see my MRI. They don’t see all those spots on my brain. I’m too young for it. I really wish people wouldn’t say those bad things, judgemental things. There’s even more types of things, but I guess I’m just too young to have MS.

Fatigue. A lot of people say, “Oh, well, I’m a mom of four. I’m fatigued every day when I wake up,” and I say, “Well, it’s not just when I wake up.” Fatigue just hits me and knocks me down, to where I have to take a seat. I have to sit down. I can not go on. There’s a difference in chronic fatigue and just being tired and I wish people would understand that.

The thing I think makes most people cringe is when someone says, “Oh, you look so good.” And it used to make me cringe a lot and I wanted to try to tell them “Well yeah, but you can’t see how I feel, blah, blah, blah.” But, I’ve learned over time to say, “Thank you. I’ve had some challenges,” and just move forward, because that’s really all you need to say.

Most people think my wife is lazy, that she doesn’t want to get out of bed, or that she’s just looking for drugs or pills, whenever we go to the emergency room. My wife is not looking for drugs or pills and she’s not really lazy, it’s her issues. So I wish people would know that or understand that better. That’s about it.

Oh boy, it’s a tough one. Well, there’s the typical ones. They’re, “Just take a rest.” “You’ll be fine.” “Are you sure that it’s the MS.” It’s those type of things. People don’t get it, they just don’t get it. I do get that a lot.

Honestly, the only thing bad is people might say that I’m always tired, and that’s okay. No one’s really said anything bad to me because why would they? I mean, I’m walking, I’m talking, I’m taking my medicine. I’m doing everything I should. So if anyone wants to talk bad about me, then they should maybe say it to my face, because no one has said anything. But recently with the COVID, more people are worried about me, but that’s okay. I’ll take it.

I hate when they say, “Well, you look fine,” because I don’t feel fine at all. I’m battling so many things with this condition. They have no idea what’s going on. Also, I hate when people judge me for using my handicapped card because when I get out and go into a store, I look normal, but they don’t realize I have to use a shopping cart for balance and I can’t stay in the store for too long because I get tired, and they just judge. Sometimes they will say, “You’re not handicapped,” when really I am, and they have no idea. People have invisible illnesses and they do need to park close to the store because they get tired and need to use that close space. Also, I heard, “You’re too young,” because I was diagnosed at 18 years old, so they would judge me right away and they’re like, “Oh, poor thing and pity on you,” and I had no idea what they were talking about, and I can see now that they were just trying to say that MS will greatly impact your life, but I don’t think they should have said that to me because it was just like, “Oh, you’re going to get sick and be disabled right away. You poor thing.”

People that don’t understand think we’re lazy and we just don’t want to, and you just get up and try and you can make it better if you just get up and keep moving, use it or lose it attitude. I’m one of those people that on my good days, I’ll go and go and go and wear myself out and I’ll spend two days paying for it. People don’t see the two days I spend paying for it. They don’t understand that, yeah, today I’m great. I can get up and go do all this stuff, but tomorrow I’m not going to be able to move. They don’t understand why I could do something one day and not the other day, or why I could remember something one day and not be able to remember it all the next day. They think I’m either lazy or stupid. They just don’t understand. I think people need to be a little bit more educated.

I wish people would say that they are tired or they’re feeling sick too. “Take this medication or take this. Exercise more,” and that’ll help me. And it’s like you don’t understand. So you don’t understand something, you could do the research on it or just say nothing. That’s what I would want them to do.

Permanent disability is one of the words that make me cringe, and a wheelchair is another word that makes me cringe. There might come a time, but hopefully, it won’t be any time soon but I wish doctors instead of saying, “Hey, I’m surprised you’re still walking,” would say, you know “You’ve got this.” Instead of thinking about the negative all the time, because when they do that, it kind of makes it hard for the people who have to deal with it.

I’ve gotten “Oh, how long do you have until you progress.” Or, “Oh, you don’t look sick. I would have never known.” Like they expect you to look a certain way when you are dealing with something like MS. I just feel like there’s a stereotype that people have like a vision of that suffer with MS. They think that they are supposed to be cripple or whatever and I just don’t think that that should be said.

Things that make me cringe where people wish they wouldn’t say, the things that I wish they wouldn’t say is, come to me and ask me or tell me, “Well, my cousin, or my auntie, or my uncle, or my friend have these and they use this kind of medicine or they do this.” Just because they do it or they did this, or they did done that, it don’t mean that it’s going to help me. Everything, everybody’s different. So don’t come to me telling me what helped them or what they did. That really just so burns me up. I just hate that. But that is the most thing. That burns. I just don’t like that. And that’s most of the thing. And then every morning, or every evening, I’m limping or you see me frowning, but you like, “How was your night? How was your day?” Or, “You look like you’ve had a bad night.” Why you asked me, you see I look bad. So why you asking me all this? So why you saying it? Just say hi. Just say hello or something like that. You don’t have to ask me how I’m doing. You see how I’m doing. So why are you asking me?

What I wish people wouldn’t say to somebody that has MS is. “Me too. I get that, too. Yeah, you’re just getting older.” They try to push your complaints to, “You’re getting older,” or, “Everybody gets dizzy,” or, “Everybody has a headache,” or, “Everybody gets tired.” That’s a big one with the fatigue. They don’t realize that you feel like you are in quicksand. It’s just so difficult to get other people that aren’t going through something to have compassion and understand what you’re trying to say. Everybody always just wants to poo-poo everything and don’t have any compassion for you. The major one is if I’m fatigued a lot and everybody, they commiserate, “Oh, well I’m tired too. Oh, I’m tired.” But they don’t realize what type of tired I’m talking about. People just don’t get it and it’s a shame because there’s so much less empathy and compassion, I think, in the world. People just care about themselves and that’s a shame.