Talking about MS
In our interviews, people talked about deciding whom to tell about their initial MS diagnosis and symptoms, how they talked to other people about their MS, and how they dealt with negative comments and reactions from people, particularly in public.
Deciding Whom to Tell about MS
For many of the people we interviewed, deciding whom to tell about MS was a process that included both the disclosure of an initial diagnosis and ongoing conversations about symptoms. People described telling family and close friends about their initial diagnosis, and reactions varied from highly supportive and reassuring to highly emotional. Jim and Jason worried about telling their mothers out of a concern that they would feel that they had done something wrong to cause MS or could have done something to prevent it. Elaine recalled feeling embarrassed, ashamed, and afraid to tell the people in her walking group about her diagnosis and inability to participate in their walks.
Dev strategically decides who he tells about his MS.
Dev strategically decides who he tells about his MS.
Some people shy out of that because they don't want to know about it. Some people-- I think so my mom, my dad is not there, so it's my mom. She knows about it. She is not over here, she is in India, but she understands my issue. But most of the people or most of the friends, half of my friends whom I have talked to, they don't understand it. Or I would say, in some places, I am hesitant to even share that with my friends and family because I think that either they would not understand and then they'll start contemplating it in a very different or very negative way. So, it's better I don't even talk to them.
INTERVIEWER: How do you decide who to tell and who not to tell, who to talk to about it?
Whom to talk to is the person who actually pays a lot of attention to me, I think so. Or who is close to me or who has been not sympathizing on my way of life is the person whom I would definitely sit down and talk and help him or her understand what I'm going through. Generally, I’ve seen, and pardon my story out here, but Indians generally sympathize, they don't empathize with you, which is unlike the Americans. OK? And there's nothing racial about it. But this is the way the society has been mapped. So, they try to sympathize a lot, which I dislike in my way of life.
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So that's the reason I shy out of people who start off saying, “Hey I'm so sorry that you can't walk.” So, I don't even talk to them. I keep myself very out of it.
Some people worried that they would be treated differently after others learned about their MS. Kim recalled telling some classmates about his MS and getting “all these puppy dog eyes, which he found frustrating. Jason, Kara, Elaine, and Dina worried that other people would respond with a “pity party” or feel sorry for them.” Bianca worried that people would see her as “one of those pitiful people.”
Alejandro anticipated negative consequences of people at work knowing about his MS.
Alejandro anticipated negative consequences of people at work knowing about his MS.
Of course, at work, it's the fear of people looking at you differently. And for me, many of my good friends that I work with, or have worked with, and now they're still part of my profession. And there was this idea that by telling them, I was just outing it to the whole profession. Which is, by the way, insidious. And it's a terrible way of thinking. And it needs to stop, that way of thinking. But I know. I know. I know why I did it. So that was a big part of it, not showing weakness, and then the idea that if you are in a profession where you're supposed to help others, when you yourself are showing a weakness, that you perhaps are the person who needs help, that idea can play with your mind. So those were really the things behind it, to the point of when you're asked a question, “How are you feeling today?” You may be feeling terrible, but you answer fine because you're not going to tell. And that has also this effect of that's how you start living your life, with this thing inside of you that's very active, very aggressive sometimes, and then this other conversation to the outside world that is just like everything is OK. So, to me, every time I hear somebody say everything's OK, that's an invitation for me to ask the follow-up. What do you mean OK?
Rhonda hid her diagnosis for decades.
Rhonda hid her diagnosis for decades.
INTERVIEWER: Can you talk about what it’s like to tell people about your MS?
I usually don’t. I hid it up until 2016, which is 26 years. I just didn’t have anything to do with the people that I did before. I mean, my coworkers knew. But if I would see them out in public, I would hide from them because I was ashamed that I couldn’t work. I felt like a bum.
And I eventually told-- my best friend knew, of course. But I isolated myself from everybody. My family knew-- and they didn’t know for 10 years. I had such a hard time telling people because at that time, I lived normal. When I wasn’t using a walker, or even when I was using a walker, I’d have people in the store say, “she doesn’t need that walker”. How do they know? They don’t know me. If that’s how strangers are going to react, how are people who knew me working two jobs and working search and rescue going to react? That was my line of thinking at that time.
But even when I have family telling me it’s a made-up disease, or neighbors saying, “well, you’re just in it for the Social Security check. At least you got that”. Like that really compares to my prior income? I don’t think so.
INTERVIEWER: When people would say negative things or not believe you, how would you respond?
I didn’t. I just let it go and internalized it, and it made me feel worse.
Dina finds it difficult to decide who to tell about MS.
Dina finds it difficult to decide who to tell about MS.
INTERVIEWER: So how do you make decisions about who to tell about your MS?
RESPONDENT: That's really hard, and I have found that the platform of being very open prior to my move up here, up in [LOCATION], was very open, and when I talked to, I shared information with. But I'm really much more reserved when I came up to here, because everyone I talked to had someone or some story about someone that they knew with MS that was some debilitating story, or just like, “Oh, isn't it awful that they have?” And even some of my closest friends up here, it took a long time for me to tell them. Because, again, no one saw any disability, because I don't have something that's overtly noticeable, that it wasn't necessary for me to say these things. And it really only was until I had the optic neuritis, and I was like, maybe I shouldn't drive. It was minor and I could drive, but it was something that I just would be more comfortable . . . that I intended not to do if I didn't have to. So, deciding who to tell is really difficult, and I found that people are generally positive, but I have really closed that loop of the number of people that know that are new friends to me are few. And it's mostly because, who knows? If someone is going to see this on a website, they'll be like, I know that person. I won't care, but I do find that people seem to have some kind of story to it that just makes me batcrap to hear that be the experience of like, “Oh, that's so terrible. Is it bothering you today?” Like please. So that's my knee jerk reaction with that. And the job I have been employed with up here, I have not told at all. And well-known in my old workplace in New York that I did, to the point where my assistant would make time for me to use the office bathroom on Friday afternoon so I could do my injection uninterrupted. I didn't feel like the closeness, the support would be there in my jobs up here that was necessary.
Grace waited for the right time to tell people about her MS diagnosis.
Grace waited for the right time to tell people about her MS diagnosis.
Well, when I was first diagnosed, my family all knew. They knew it at work that I was in the hospital. I don't know the extent of what was said with my friends and stuff. My close friends know. I don't necessarily broadcast it to everyone around me, more acquaintances. Because I don't want it to be the-- I don't want people to look at me differently, and I think, to me, I was like, well, it really doesn't matter at this point. It's not impacting anything. So, I don't really say much. Like I said, until I get closer to someone. So, I met a lady and we got to be friends. And then I didn't tell her for a long time, and then finally we were talking one day, and she said that she was tested for MS at one point. And I said, oh, you were? Because, I said, that's what I have. And so, we were talking about it. And so, I look-- I kind of don't necessarily tell that to everyone, but just when I feel comfortable, I think, when I want to do that.
People who were dating talked about deciding when to tell the people they met that they have MS. Elaine didn’t know if it was better to tell people right away or wait because it might scare people to away from getting involved. Mia decided not to tell her boyfriend right away and he was angry that she lied to him. In contrast, when Nora told a boyfriend about her diagnosis after a few months, his response was “OK, so what?”
Jason prioritizes being open and upfront about MS when dating
Jason prioritizes being open and upfront about MS when dating
Oh, just, hey, I have-- so dating, it's more like, “Hey, my name is [NAME]. I have MS.” Because there's not really-- unless the conversation steers it in a way where it naturally comes up, there's not really a good way to bring it up. And I used to not-- I used to not bring it up and just let people ask when they see me walk, but that's kind of awkward, too, because it's like, well, why wouldn't you share that? Because it can absolutely change someone's opinion of you. And not everyone knows what it is. But the people that do know what it is, especially if they-- like, if I meet someone who also has a chronic disease it's like, all right, is there really a future here? Do I really want to put myself in a situation where I'm managing this and they're managing their thing? So, I get it. It can definitely be a negative. And I'm OK with that. I don't want to spend time with someone who isn't comfortable being around someone that has a chronic disease. So, it's just easier to get it off the table. Just like there's the things that you don't bring up on a first date like politics, religion, kids, whatever-- I bring all that stuff up, because if there's no-- we're not compatible on the things that are important to me then there's no reason to meet in the first place, because I don't need to waste my time with you. Not to be arrogant, but I value my time. I work like 80 hours a week, so the time I spend not working is very valuable to me. So, yeah, I think it's just being honest. And I feel like if I'm honest about that then at no point is someone like, well, what is he lying about? Like, I hold myself out to be a very high integrity-- maybe not high moral character, but at least I'm not going to tell a lie. And if you can be honest about the shit in your life then people are more comfortable that you're being honest about the little things, I guess. That's why even with my clients, when it gets brought up, I tell my clients that I have MS. And I-- I don't know. It's just, it's something I'm very open about.
Having Conversations About MS
For most people we interviewed, talking about MS was a way to help people understand their symptoms and get the support they needed. Jennifer realized that, for her, talking to other people was the beginning of healing because MS can feel really lonely. Marquita said she loves to talk with others about her personal experience with MS and uses social media to educate people about it. Debbie also said she would try to educate folks when she can, and Mercedes found that people are very receptive and ask questions about her experiences.
For some people, having conversations about MS was important because people in their lives had understanding MS and the impacts of MS on them were not easily apparent. Kelsey said that she feels like she’s passing as someone without a chronic disease. Kara had to remind people about her MS because it’s “not in your face all the time.” Mia and Elaine encountered people who told them “but you look so good,” and “you don’t act like you have MS.” Nora and Liz worried that their friends didn’t believe them when they had to make last minute changes to plans due to MS symptoms like fatigue. Rhonda was aggravated that she felt that nobody believed her that MS was a real disease.
Dani has had negative interactions with strangers who didn’t understand her MS.
Dani has had negative interactions with strangers who didn’t understand her MS.
When I first got my disability placard, and then now I have a license plate, people would always look at me. People would say things to me and be like, “Did you really need that spot? Or there's nothing wrong with you, or I'm old and you're young, and da-da.” And that used to be annoying. And I'd cycle through crying or wanting to tell them off, or actually telling them off. Hey, I'll trade you my chronic incurable disease for your legs or for this disabled placard. But anyway, now, I just I can't care. I can’t. I'm thankful to do things like this that hopefully will let people know that there's all kinds of random weird struggles. Things I couldn't have imagined your body could do wrong or make you feel. So, let's just keep that in mind when we're dealing with people. But so, laugh it off, ignore it, move on. Yeah.
Liz uses relatable examples to explain her MS symptoms to other people.
Liz uses relatable examples to explain her MS symptoms to other people.
However, you can't really understand it until you experience some of the strange sensations and difficulties that MS brings. Even with my husband, I'll try to just give glimpses into how it feels. I do remember one time online somebody had an article about using a bicycle. Actually, I think what they did is they had bikers, athletic bikers, possibly-- cyclists I should say. And they took their bikes and maybe dented the wheel, so that the bike did not pedal correctly. It didn't ride smoothly. They changed the handlebars. Maybe the handlebars were crooked. And the grips-- put knobs on them, so that it might hurt their hands or so forth. So, they took their cycles and screwed them up for the most part. And then had them-- OK, go ride 10 miles. How do you feel now that you're trying to ride? Well, you know, I'm wobbly. It's difficult. It's hard to pedal uphill and so forth. And we just kind of use that to explain. Well, that's how sometimes a person with MS feels. And I was telling my husband, I feel like I'm dragging my leg along. So put a 40-pound toddler-- a little kid might hold onto your ankle. All right, walk. Let's hike 10 miles like that and see how that goes. And they're pulling on your foot. You can't raise your foot the way you want to. So, you know, you just kind of come up with ways like that to explain how you're feeling. Sometimes it's more of a tightness. So, it felt like I just had on a pair of gloves that were just way too small. And that's how my hands felt, was just that pressure, whether it's the prickly feeling, itchiness. And I think everybody at some point has felt numbness if you've sat on your leg too long or so forth. But you know incorporate all those things together, and then try to go out and work, and drive, and do everything they would typically do. It all becomes more of a challenge.
Others detailed the experiences of telling their children about their diagnosis (See: Pregnancy and Parenting with MS).
Dealing with Negative Comments and Reactions
Some people described explicitly hostile reactions to their MS. Tiffany recalled how people at school called her “seizure girl” and felt embarrassed about the possibility of having a seizure in front of people who had not shown support in the past. Marquita described it as “really painful” when strangers commented on the way she walked or talked. Elaine became really angry when someone made comments that she was drunk when she had difficulty walking. David R. said “you just have to have a thick skin” when people joked about his disability or didn’t make accommodations for him. Liz also tried to laugh it off when people made jokes or questioned the nature or severity of her symptoms, but still felt hurt. Tiffany, in contrast, has yelled back at people who make negative comments. For Jean, being excluded from activities or people assuming that she was not capable of doing things has made her be assertive about what she can do on her own. Debbie shared that she felt humiliated when her daughter blamed her for an accident she had at the movie theater.
Raven describes the discomfort that other people felt when interacting with her.
Raven describes the discomfort that other people felt when interacting with her.
There’s a kind of invisibility around MS that I, you know, experienced immediately or I observed immediately the first time I was not able to walk in a public space, at a Home Depot, and one of the first times that I realized that I was not going to be able to walk the expanse of a store like that, and I needed one of the kind of carts that they have there handy for people who have disabilities. And of course, like everybody else, I’ve seen them there, not paid any attention to them until I needed one and essentially became a disabled person. In that moment, I was really aware that I have this other label that I just didn’t know I was going to have, kind of slap in my forehead, you know, my body was really hurting at that point, and I just knew that I wasn’t going to be able to walk. And so, I sat in one of these carts that you can sit in, and I thought that, and I rode up to somebody as I would generally have walked up to them and ask them something about something, where ask them about where something was. And the person looked almost pained, you know, to have to look at me. And so, they literally just looked over my head and spoke to the person who was standing behind me, maybe because, over one of my shoulders, as if I had really said nothing. It was obvious, you know, that I had, and it was also obvious that the person wasn’t really consciously choosing to be cruel in that moment, but just being, just the encounter, the unexpected encounter, you know, with this person in this wheelchair. And also, I was younger at that time, and that was also, I think, disconcerting or disarming for people, to see a woman in her 30s, 40s, you know, sitting in a wheelchair and not feeling like they can ask about why.
Marquita feels like people look at her differently due to her MS.
Marquita feels like people look at her differently due to her MS.
So, I walk with my arm up, because I don't know why, but when stuff stopped working, that's how my arm was. It wasn't natural for it to just fall. It was natural for it to come up. Anyway, so I'm walking weird. And these two white ladies are like sitting on the bench in front of the building. This lady says, “Oh, girl, what happened to you? Why are you walking like that?” And again, it's my speech is off. So, I can't say the stuff that I want to say. But yeah, I just feel like it made people look at me differently, which was very hard.
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I just told her that I have MS, and I kept walking. Yeah. But it's not so much as what I say, as how I feel. It was just a really-- that was just a really painful time for me.
Elaine recalls dealing with strangers making negative remarks about her gait.
Elaine recalls dealing with strangers making negative remarks about her gait.
The thing that I, that sucks is it’s like I, I’d be out on a date, and my date heard this as we were leaving the restaurant. You know, I always say, "Oh, I got to get my land legs up" because my legs get numb for sitting for a long period of time. And I’m not using the cane, I’m not using any walking assistance. And these kids, these young people made a comment that I had been drinking because my walking was off. And when he told me that afterwards, I said, I want to go in there and slap them in the face and say, "I have MS, next question?" You know, I was so angry to hear that.