Gender, Race/Ethnicity, Age, and MS
People we interviewed talked about how age, gender, race, and ethnicity affected their experience of having MS.
Dr. Mowry talks about gender, age, and MS.
Dr. Mowry talks about gender, age, and MS.
Like most autoimmune diseases, MS appears to affect women more often than men. The ratio seems to be around three to one in MS for women to men.
We know the average age of onset is in the early thirties for multiple sclerosis, but with a pretty wide range where, I mean, I've seen a couple of people who had their onset, you know, before age two.
It's very rare, but certainly pediatric onset MS is more common than was thought to be true 20 years ago. The majority of those people being post pubertal, you know, teenagers because the immune system itself cools off over time.
Diagnosing people with relapsing MS is less and less likely after, you know, say the early fifties, early to mid fifties. If people are diagnosed, you know, above 40, there's a higher chance that they have a more progressive type of MS.
Gender Stereotypes
Some people talked about difficulties they faced with MS due to their gender. These included not being taken seriously by their physicians or being dismissed due to not fitting into the mold of what a “typical” MS patient looks like. Amy felt like her complaints about disease symptoms were not being taken seriously due to stereotypes people may have had about women complaining too much. Dev wondered, “how can MS affect me?” since he, a 35 yr.-old male at diagnosis, did not fit the bill of what he understood a traditional MS patient to be.
Kim attributes his delayed diagnosis to his gender and clinical presentation.
Kim attributes his delayed diagnosis to his gender and clinical presentation.
It's hard because, again, so with MS-- in medical education, every kind of disease has like the prototypical stem attached to it where this is the classic patient that experiences this disease. This is the classic age that they get it that. This is the classic sex of the patient who gets the disease, and you're taught these things in kind of the classic presentation when, in reality, medicine is a complex thing, and nothing's ever that simple. So, the classic patient who gets MS is a young woman in the 20s, and the classic way they present it is with a visual disturbance. And so, we'd be taught this way of reading the question stem that's like a young woman who's 23 years old, suddenly experiences blurry vision and pain behind her right eye, and you know it's MS immediately. But then it would be kind of frustrating for me because it's like, no, I'm that person also, but I'm not a 23-year-old woman, and I didn't have pain behind my right eye, and my vision is fine. So, there'd be some, again, hey, let me tell you that it's not always this, and look out for other things because if a patient's coming in and they don't have that perfect set of symptoms, they could still have MS, and don't discount what they're saying just because it's not this one particular way that we're taught to process the information.
Debbie recalls feeling that her identity as a woman prompted inappropriate questions from her doctors when she was diagnosed.
Debbie recalls feeling that her identity as a woman prompted inappropriate questions from her doctors when she was diagnosed.
INTERVIEWER: Can you talk more about this experience of having the doctors asking you things about your marriage and stress?
Yes. I mean, now, looking back, it's so offensive. It was offensive then. I was more, I think, less offended at the time than astonished. Like, where is this coming from? And I was open to any possibility at that point. I just wanted to find out what was happening. And it starts playing tricks with your mind. Like, oh my gosh. Is it me? Am I making this up? No one else can see it. What is going on? And you really start to think you're going crazy. Now, looking in retrospect, highly offensive, highly offensive. And I doubt that we would have that response today. I would certainly hope not.
INTERVIEWER: Do you attribute that to your identity as a woman?
I do. I do. I don't think they would ask that question of a man, you know? I think if I was a male, and I come into the hospital at that point, would they ask a man, “Are you having trouble with your marriage?” I seriously doubt that. So that's why it's so highly offensive.
Jim felt dismissed when trying to get diagnosed because of his age and gender.
Jim felt dismissed when trying to get diagnosed because of his age and gender.
So you know being dismissed-- you know in part, I felt you know like maybe it had a lot to do with the gender and age of my doctor at the time, and my gender and age, and with the shape that I was in you know. So, I was not-- in his mind, I was a manly man and so I-- I , at least that's the way I pictured it. That might not be a fair assessment, but that's really how it turned out.
Race & Ethnicity
Some people talked about the ways their race and/or ethnicity affected their MS experience. Dulce attributed incorrect racial stereotypes about people of color being less educated for why she was talked down to by a neurologist. Li thought that being white meant that she got better care.
Dani’s experiences have been negatively impacted because she is Black.
Dani’s experiences have been negatively impacted because she is Black.
INTERVIEWER: How you think that your identity as a woman, as a Black woman, has affected your care, your diagnosis, and your experiences getting treatment?
Yeah, hasn't been great. I sometimes check in my-- I have to check with myself and be like, so-- because you kind of know when they're not seeing you as a person. And you don't want to believe that of anyone. So, a lot of times I would be like is it just me? Was it weird? Luckily, there's Black Twitter, and you can find out anything. So, you just search that doctor's name and someone on Black Twitter knows. So sometimes that happens. And I have to figure out just do I keep pushing, or am I being a baby? Maybe my back is totally fine, and it's just in my head. And so, I don't know. It's unfortunate. It means I have to be an even bigger advocate for myself and be like, I'm not giving up until you pay attention.
Marquita talks about her symptoms not being taken seriously due to her race and gender.
Marquita talks about her symptoms not being taken seriously due to her race and gender.
INTERVIEWER: So, we know that things like race, and gender, and sexuality affect people's quality of care. So how do you think that your race and gender has affected your quality of care in the way you've been treated with your MS?
In the beginning, in the beginning, I would probably say that, yeah, it was probably, that was probably a reason why I wasn't taken seriously maybe. Because I'm just some Black girl who is just complaining about something. And what I'm complaining about, it doesn't even sound real. Like, why would something on me be numb? I don't know. I would never go back to see that doctor. I never went back to go to see him. But yeah, now, like I said, I am more vocal when it comes to my health. I feel like an MS expert—at least my MS. I'm my MS expert. So, it's not a whole lot that a doctor can really try to tell me.
Mercedes benefits from being in an African American MS support group.
Mercedes benefits from being in an African American MS support group.
And then I moved to [LOCATION], but once in [LOCATION] I found a stronger support group and that they were more that were African American [INAUDIBLE] better relate to in terms of having this diagnosis. But that was a larger population that of whom I could rely.
INTERVIEWER: Can you tell me a little bit more about that experience of-- of being in the support group and the aspect you mentioned of having other people who were African American?
I think that it was just beneficial because we could relate culturally and to the disease that we all had in common. And then some individuals were also supporters of individuals with MS. So I think just even just having someone to talk to. You know, just what were you experiencing? What are you experiencing and what you do with that with regards to that-- that disability or what have you, or that sign of that symptom? What do you do with that and how did that affect your daily work and-- and living et cetera? So just to have those conversations and in-- in-- in a manner where you felt comfortable was beneficial.
Age
Age was also important to how many people experience MS. For people we interviewed who were diagnosed with MS at a young age, the experience could be alienating because it did not align with expectations for this time of life. Kelsey found that going to a urology clinic challenged her identity as a young and healthy person. Tiffany’s medication, symptoms, and frequent hospitalizations made her unable to travel, hang out with friends, and do other things she enjoyed like hiking and going to amusement parks. Tiffany felt it was unfair that she was diagnosed with MS as a child and added, “I have so much to live for, but MS has made a toll in my life. It's restricted me from doing a lot of the things I wanted to do at such a young age.” Makenzie was only 13 years old when she was diagnosed and felt that no one her age understood what she was going through. Ann said that she was “surprised to be as old as I am because I never expected to get there,” given that she knew someone who died of MS at a young age. Grace shared that she worries about MS affecting her cognition as she ages.
Debbie is starting to think about how MS will impact her in old age.
Debbie is starting to think about how MS will impact her in old age.
INTERVIEWER: Can you talk about how your experiences with MS has affected how you think about the future?
Yes, especially at my age. I'm 58. And so, I'm starting to wonder, where will I live? Will I still be able to live alone, without resources coming into my home? Will I need resources? Should I be in a retirement facility? All of that is playing into my mind, especially at this age in life. So, it's more prominent now than ever.
Kara has found interacting with older people with MS to be challenging.
Kara has found interacting with older people with MS to be challenging.
I've only met one other person my age, in my age group, that had MS in-- you know, since I've been diagnosed. So, I don't have a lot of resources other than the internet right now.
INTERVIEWER: And what is kind of the significance of age to you and thinking about connecting with other people?
A lot of the older people that have MS that I have been around, especially during infusions, have not been very welcoming. They're kind of in their own little bracket, in their own little bubble, and they’re-- they’re-- they've had it for a long time, or they were diagnosed late, and so their symptoms are significantly worse than mine. So, their symptoms are worse based on either how long they've had it or late diagnoses. And I-- my symptoms are very minimal, and they prefer to talk to each other than-- like, you know, I'm just kind of there. And I kind of get scowl looks, because, I mean-- I under-- I can get it, because it's like, it stinks for them, especially if they had a late diagnosis, that all this can have been prevented, and I'm in, or, you know, they remember being-, having this many symptoms, and look where they are. So, I just don't get a very warm, fuzzy welcome from people in a different age bracket with MS. So, and-- which is OK, which is fine, I mean that's how they feel, and that's fine. They're justified in their feelings. So, with the person that I met in my age bracket, it was a lot more calm, and we were able to discuss more things, and how long, and he actually had the same neurologist, and you know, it was more welcoming. So it was more of a-- a similarity.
Makenzie recalls how she felt about having to use a walker at a younger age.
Makenzie recalls how she felt about having to use a walker at a younger age.
I had to borrow my grandma's walker, or her cane, from her knee replacement surgery and I just felt like-- I was, I think, 22 at the time. I felt so like, I don't know, it was a weird experience. And using the walker, like I just felt like I was, I don't know, 90 years old, and I was 22. And it just, it gets depressing sometimes, I guess, and just not what you would expect as you're in your 20s. But it was the hand I was dealt, so I just used it.
Mia’s perception of her MS symptoms has changed as she’s gotten older.
Mia’s perception of her MS symptoms has changed as she’s gotten older.
And I just have actually just learned a lot about myself in these last 10 years through all of my health problems. And I don't have that many health problems. But just through the evolution of getting older, I'm like, everything doesn't have to do with my MS. Sometimes I'm just getting older, you know? And my eyesight is getting worse because I'm getting older. Oh, it's a symptom of MS. I'm like, well, everything can be a symptom of MS, you know what I mean? But so is getting older.