Multiple Sclerosis

Dani

Age at interview: 34
Age at diagnosis: 24
Outline: Dani was diagnosed with MS after her coworkers started noticing symptoms. She experiences migraines, fatigue, leg pain, and back issues. Dani worked in advertising until her symptoms made it impossible for her to work full-time. These days, she devotes most of her time to her daughter.
Background: Dani lives in a small city with her daughter, who is 11, and her parents. She is a full-time mom. She is on disability, and previously worked in advertising. Dani identifies as a heterosexual Black or African American female.

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Dani is a 34-year-old woman who was diagnosed with Multiple Sclerosis in her early 20s. A few years after moving to a new city and starting her dream job, Dani’s coworkers started noticing that she was slurring and explaining concepts in a circular way. While she did not recognize these symptoms in herself at the time, she now calls this period of time her “drunken period.” Dani also started to notice frequent headaches and increased clumsiness. Through an MRI and spinal tap, Dani was diagnosed with Multiple Sclerosis. Upon hearing her diagnosis, she remembers breaking down and feeling that she was probably going to die.

After starting the disease-modifying medication Rebif, Dani came to feel as if she was not really sick, given that she was working and “doing all this great stuff.” But her coworkers started to notice that her work was not making sense and she started experiencing symptoms such as fatigue, dizziness, and memory loss. Despite her concerns that things were not great, her doctor kept telling Dani to wait and give her medications time to work. Eventually, Dani collapsed and went to the hospital, and she then found another doctor who promptly switched her medication to Tysabri. The damage from the relapses persisted, however. While her employers and coworkers were accommodating, Dani continued to feel sick, making it impossible for her to work full-time. Dani feels that she would have benefited from a month-long sabbatical to get her body back on track but the “unpredictableness” of her body conflicted with the demand of her job. She decided that working was making her MS worse and “quality of life is important.” Her current job is to be a full-time mom and not be sick all of the time. The decision to stop working was “maybe the hardest thing” Dani had to do as she loved what she did and the people she worked with. She “couldn’t imagine just leaving that life.”

Dani is on disability pay and has Medicare which “has been great in some ways” but recently, it has been difficult for her to obtain the medications that work for her. In some cases, GoodRx and Pillpack have helped her to obtain needed medications. Currently, Dani uses Tysabri (a monthly infusion) as well as medications for symptom management, specifically for her migraines and fatigue. She has other symptoms like leg pain and back issues, but she does not take anything for these as she concluded that the financial costs and side effects of medication would outweigh the benefits.

Dani’s previous medical experiences of doctors failing to believe her or health care providers hesitance to touch her has shown her that “being Black brings a whole other wrinkle to things.” She emphasizes that her identity as a Black woman makes her an even bigger advocate for herself and empowers her to say, “I’m not giving up until you pay attention.” Dani’s understanding of her illness and its implications for her life have changed over time. Dani’s family and friends are significant sources of support. She feels lucky to have a large family with many aunts, uncles, and cousins who would do anything for her. Dani is “not mad” about her diagnosis. Having MS has allowed Dani to spend more time with her “little sidekick” and has made her a better mom. Her advice to others with MS is to remember to laugh, be selfish with self-care, and do not be afraid to change doctors. She hopes that everyone will realize that they have “other awesome things to offer outside of working.” She wants health care providers to listen, “we really, really know our body. We’re stuck with it for hours upon hours. And we know when something’s not right.” She also wants the world to make more room for people who have cognitive differences and offer more opportunities for people with all sorts of disorders because “we do have things to offer still. It’s just, we might need a little extra something to help us get there.”

 

Dani didn’t want to go “too deep” in her internet searches.

Dani didn’t want to go “too deep” in her internet searches.

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Sometimes you don't need to. Because what you find you may not be able to fully understand, which is usually the case.  So, there is no use in me going too deep and trying to figure out if I'm going to die 10 years earlier than everyone because I have MS. Or just seeing all the bad things that could happen. I don't want to read about if I'm going to lose my bladder function. I can't-- I used to, and I used to write it down and cross-check, and do deep searches on weird places on the internet. But it's not helpful.  

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So yeah, Google and I broke up, and it's been fine. Me and my email broke up. I know I literally have thousands, and it's from companies sending me try this and that. And I don't deal with it. And it's better that way.  

 

Dani decided to prioritize her doctor’s approach to treatment over their likeability.

Dani decided to prioritize her doctor’s approach to treatment over their likeability.

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And the doctor that I was with at that time was very positive about it, very like huggy, and we'll get through this together. And she gave me all these beautiful pamphlets of medications. And she was just kind of like, choose one, choose what you like. And I was like, this is great.  

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And at that point I was kind of just thinking I hope we caught it early. And she seems really chill about it. So, I was thinking it's not-- maybe it won't be as big of a deal as I thought.  

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So, I think it all came to a head one day when I was going home, I remember going to my bedroom and I just kind of collapsed. And things just blacked out. And I was just dizzy and seeing two of things. And that's when I called my mom and I was like, “I think something's seriously more wrong than what she's saying.”  And I ended up going into the hospital and staying there and getting a round or two of Solu-Medrol. And I remember one of the doctors-- it's all kind of a blur, but one of the doctors told me that I needed to change doctors and get someone who is serious. And I was like, what do you mean? And she was like we did MRIs, and we did an MRI of your spine. And if you don't get on to a different treatment plan you could be not walking by the end of the year. Or she listed off all these awful things that I didn't even know was possible with MS. And it just kind of kicked me into gear and I was like that lady was hugging me and telling me things were great. And now I'm going to be in a wheelchair, which at that time I thought was the worst thing that could happen, which it's not. But in any case, I got a new doctor. And he was pretty much-- he put me on Tysabri right away. Which I thought was really drastic, but he's like you have to. And so, I did. 

 

Dani wishes her healthcare providers had better communication with each other.

Dani wishes her healthcare providers had better communication with each other.

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It would be nicer to be able to have better-- I don't-- I kind of have a primary care doctor. But it's not like-- she's not as involved in my care. They're not the doctor's office that's going to call and figure things out with my neurologist and my hematologist. And I really need my primary care doctor to be the glue. And I don't have that. And that's just unfortunate. But hopefully if I can one day move, that is something I'm going to look for in a city is what's their care systems like? Is there a facility that has everything under one roof? Because that would be amazing.  

 

Dani finds getting regular MRIs to be comforting.

Dani finds getting regular MRIs to be comforting.

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I like them because I mean, I don't know what's happening up there other than what I feel. But I do get paranoid sometimes that more damage may be happening, and I don't know. And I really like getting that MRI and getting that call from them saying everything's stable, and there is no swelling, or there's no any of those other things I don't Google anymore. But yeah, it's very comforting.

 

Dani plans out her day to conserve energy.

Dani plans out her day to conserve energy.

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I have to take things slower. Pre-MS Dani used to multitask like crazy. But if I were to multitask like I used to, I'd be out of energy by like 10:00, and that's not helpful for anyone. So, I do spend a lot of time planning. Because planning for 30 minutes on paper can save me.  I'm going to use the spoon theory; it could save me five spoons. Whereas, if I just fly by the seat of my pants I'm again, going to run out of fuel fast. And then what are you supposed to do? You can't do anything. Because I can't push it. I won't let myself push it.  So, a lot more organizing. And I'm not naturally the person who before would have taken out a planner and thought ahead of this and that. But apparently, you need that to be a parent. So, it's good that I now just naturally do it.

 

Dani struggled with the decision to stop working.

Dani struggled with the decision to stop working.

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But after some months I realized I can't do this. I just kept getting sick. And I kept feeling worse. And it felt like more symptoms would pop up after I thought I got one or another thing under control. And it's really just that the way MS in my body works is that working 40 hours a week isn't possible. It starts to make me worse. And quality of life is important. And now my job is to be a full-time mom and not be sick all the time.

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INTERVIEWER: How was that, making the decision to stop working?  

So, oh, maybe the hardest thing I've had to do. Which probably sounds silly, because I know a lot of people are like, “Oh, you don't work, must be great. I wish I had that life.” But I graduated from UT from a specific special sequence. And at the time it was one of the best advertising programs in the country. And you get every semester, they chop off half the class and they're gone. And so, to get through that was really big. And I loved, loved what I did, and the people in it. [CRYING] So I couldn't imagine just leaving that life.  And then I didn't know anything about disability pay. So, I was just like, what are you supposed to do if you stop working. And for a while I thought I could just do part-time.  But the unpredict ableness of my body doesn't jive with the way America likes working to beat you. You can't take a month-long sabbatical to get your body back on track or anything like that. And just pushing through was-- pushing through it was going to come at a greater cost than just stepping back and trying to create a new normal. So, it's very hard. 

 

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.

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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.

 

Dani thinks that MS made her a better mom.

Dani thinks that MS made her a better mom.

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She's 11. She's probably the best thing I've ever done. And having MS has maybe made me a better mom. Because she's my number one job. And she doesn't have to compete against another job or career.  I have to slow down. I'm not the go, go, go, person that I was before. So, it allows us-- we're very close and very connected. And it's because I am the one who-- I can sit around with you for three hours and play with dolls, doing whatever imaginary things. Well, we're out of the doll phase, but anyway, you know what I mean.  So, I guess she's like my little sidekick. My little best friend. And it's nice to be able to grant her so much time. So, I'm lucky in that way.

 

Dani feels unvalued now that she can no longer work.

Dani feels unvalued now that she can no longer work.

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But I think not being able to work-- going back to that-- that affected it a lot. Because until then I didn't realize that we spend the whole first part of our life being people-- the first thing they say is, “What are you going to be when you grow up?” Or you're in school and you're working towards being whatever. And college you're focused on attaining this whatever great job. And then take that away you almost feel like nothing. When people ask what do you do, and in your head you're like, well, I guess do nothing. That feels awful. And just as a society, a lot of who we are is wrapped up in what our occupation is. So, I had to do a lot of realizing that that's just one part of you. And it doesn't mean that you're not worth a ton just because you don't have that aspect of yourself anymore. But yeah, so that was hard. And as you can see, I still get sad about it. But it's not nearly as bad as it was initially. Just feeling like I don't know-- a lot of it is in our world they don't make room for people to not have jobs. Even when you're just a mom at home, you have to add I'm a mom with kids at home and I do this and that. And I wish I could tell-- warn everyone, that hey, hey, hey, make sure you're realizing that you have other awesome things to offer outside of working or being whatever you are. It's not you. You're not that thing. You're a separate being with special things as well. But yeah, no one's really listening.

 

Dani tries to enjoy what she is doing now.

Dani tries to enjoy what she is doing now.

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Because before a lot of my life was focused on, I'm going to work really hard now so that I can have a better future, an easier future. So, the future is now. It's every second. And you have to live this one beautiful life you're given, because you don't know how long you're going to have this current state of your life. This life I'm in, my MS life, is completely different to before. And I never would have imagined that my life would change this drastically. So, it's very important that I enjoy whatever time I'm in right now of just having headaches and leg pain and fatigue. Because I don't know if a year from now, it's going to be wheelchair, headache, leg pain, whatever. So, I don't hold on to things very long. I used to joke that it's because my memory's not great. But I just don't have the energy to just worry and be angry about things.

 

Dani’s experiences have been negatively impacted because she is Black.

Dani’s experiences have been negatively impacted because she is Black.

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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.

 

Dani says to be selfish about your health care.

Dani says to be selfish about your health care.

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I would say be selfish. I always think of when they tell you if the plane is going to crash to put your mask on first, and then your kid’s mask. And that's kind of how I have to approach life. If I'm not doing well, I can't be there for anyone else. So, I do have to make sure that I prioritize my well-being so that I can do everything I want to for her. Get a good doctor. Don't be afraid to change doctors. That's a big thing. I also didn't want to hurt that doctor's feelings, which is wild. But now I will leave a doctor. I'll walk out right then if I feel I need to.

 

Dani encourages listening to MS patients and taking them seriously.

Dani encourages listening to MS patients and taking them seriously.

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Listen to us. We really, really know our body. We're stuck with it for hours upon hours. And we know when something's not right. And I'm lucky that I have a doctor that listens and will take it seriously. But I also remember growing up and hearing stories about Chronic Fatigue Syndrome, I think. And that doctors didn't believe them. And I did have some of that where at times, when I couldn't get in to see my neurologist and I had to just run to urgent care here, they kind of just would think that it's in my head. And so just making sure that listen to your patient, and believe them, is really important.

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