(Messages to) Those with Multiple Sclerosis

Receiving an MS diagnosis can be frightening and overwhelming. The people we interviewed provided advice and encouragement to others with Multiple Sclerosis based on their own experiences. 

Stay Positive

Many of the people we spoke with emphasized the importance of having hope. They acknowledged the unpredictability of MS, but, like David R., they also said “you have to come to peace with the fact that there’s always this cloud of uncertainty hanging over your head.” Jean encouraged people with MS to keep a positive attitude about it, and Debbie felt that it was important to have hope and faith that tomorrow may be a better day. Tiffany offered the encouragement that treatments are getting better, and Kim echoed this reminder by saying, “take a big, deep breath…there’s good treatment available.” Elaine and Rochelle shared encouragement to keep going and not to let it get you down. 

 

Alejandro encourages being to be kind to yourself.

Alejandro encourages being to be kind to yourself.

Age at interview: 44
Age at diagnosis: 41
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Be nice to yourself. Because that is so counter to what you can be thinking at any point in time, that just giving yourself just a second or a minute or 10 minutes to stop thinking and feeling whatever it is, and just give just 5, 10 seconds, 10 minutes to yourself, and say, OK, I’m just going to be nice to myself, even if it hurts. And it could be just laugh out loud, even when you don't feel like doing it. But give yourself that laugh, that moment of forced happiness, right? And it's going to multiply. You've got to start somewhere. You've just got to start somewhere.

Find a Doctor You Trust 

We heard about the importance of quickly finding knowledgeable and skilled health care providers. Rhonda said that it is important to make sure you are seeing a doctor who knows how to treat MS and Rochelle advised that “if you don’t feel comfortable with [a] doctor, find another one.”  It may even mean traveling to see the best doctor, but Linda & Jerry said don’t settle for your “hometown neurologist unless (they’re) very good.” 

 

Dani says to be selfish about your health care.

Dani says to be selfish about your health care.

Age at interview: 34
Age at diagnosis: 24
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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.

 

Susan recommends finding a neurologist who spends time with you. 

Susan recommends finding a neurologist who spends time with you. 

Age at interview: 63
Age at diagnosis: 39
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I'd say that find someone that makes sure that the neurologist that you have, you feel comfortable with, and that is giving you all of the information and not just-- not just treating you as-- oh, okay, here you are today and are you doing this, this, and this? okay, goodbye. I think it's more important to have a dialogue, so that-- you understand more and what's out there for you. And that isn't the case with everyone, I don't believe. And if that's not the case, I would say go to someone who would-- who can actually spend some time and talk to you about it so that you know what your alternatives are and what's available, what's up and coming. If you need support, they can help you. There is support out there for you.

Educate and Advocate For Yourself 

Many people we talked with advised self-advocacy to ensure the best care possible. Rhonda explained that being your own advocate involves “doing your own research, checking your meds, staying on top of what’s in the pipeline as far as medications,” and Dina said this includes talking to health insurance companies about costs. David S. said to do “whatever research you can from as many different sources as possible.” Jennifer advised that people trust themselves and “keep asking questions.” 

 

Liz says having information helps you live your best life.  

Liz says having information helps you live your best life.  

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I was always happy that I had a diagnosis, because then I had a name for it, and I knew what it was and then you can kind of face it head-on. And you know what you're dealing with, whereas if you don't-- and I know people like that who say, "I don't want to see my MRI. I don't want to know if it's getting worse. I don't want to know anything." Well, then how do you deal with it? How do you minimize it? How do you make it better? How do you know what your future is going to hold or so forth?  So, I think that gaining as much information as you possibly can about yourself and about the disease and what you're looking at can certainly help you to live the best life that you can. 

 

Mercedes encourages people to speak up for themselves.

Mercedes encourages people to speak up for themselves.

Age at interview: 50
Age at diagnosis: 28
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You have to be your own best advocate. You have to speak up for yourself. And you can't let people tell you what they think that you feel or what they think that they know about you. You just need to voice your-- your concerns, voice your feelings, and voice your hurts, your, you know, positive feelings, et cetera. You just need to be your own advocate and be persistent and speak loudly and clearly so that you're heard. 

 

Build a Support System and Ask for Help  

People we interviewed described the importance of having a support system and talking about MS. Tiffany recommended getting “plenty of social support and emotional support.” Dina recommended finding the people that you feel are not going to judge you. Some people said their support system involves support groups and other people who have MS in order to learn about others' experiences with the disease. They also emphasized the importance of asking for help, even if it could be challenging. Jennifer recommended everyone find a counselor (or therapist) with whom to process their experience with MS. 

 

Amy finds talking about MS to be beneficial.

Amy finds talking about MS to be beneficial.

Age at interview: 30
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Identified breast cancer mutation
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But I mean, that's the thing. If you tell people what you're doing or what you're struggling with, I think sometimes when you open up a door, people walk in with good stuff. And I think that's the one thing that-- don't be afraid to tell people, because you might find out something else.

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So, I think talking to people and not being afraid of being the victim and positioning yourself to not be the victim. Well, I have MS, and I'm kind of trying to figure out what to do with it. I mean, there's two ways to deal with it. And I think you can be here. But it's really important to take a breath and pick your head up and be here, because maybe out here somebody has got something for you. And I think that is-- that goes back to the mind game struggle. But I would just say be open to listening to people. Be open to talking to people. And then, you know, take it all in. You don't have to do this or that, but maybe this or that might be good. And you won't know unless you talk.

 

Dulce encourages being open to receiving support and help from others. 

Dulce encourages being open to receiving support and help from others. 

Age at interview: 42
Age at diagnosis: 39
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And then for patients, I've learned this with this episode yet again. My friend reminded me of it today. People who love you want to know what you need. They want to know how you're feeling because they love you. You don't have to do it alone, especially if you are normally a very independent, autonomous person and you're used to doing it alone. Maybe it's time to break out of that framework. People who love you just want to do something. So for some people they say, what can I do? I just-- I would love your time. I would love a hug and a walk. And that's just something. People want to give you something. And let them, be open to receiving. 
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If you're scared about medication side effects, reach out to someone that's not on your medical team. Reach out to a local MS center and support group. So that you can learn about why maybe you shouldn't be on an old drug when there's so many new ones. Or if you're scared like me to be on an IV drug that sounds really scary and you hear words like immunosuppression, like talk to some unbiased party who has no skin in the game, who doesn't even know you. But it's scary to do that. But this is a scary disease. So, you just have to get comfortable with doing scary things. 

 

 

Bianca advises people to ask for help when they need it.

Bianca advises people to ask for help when they need it.

Age at interview: 68
Age at diagnosis: 41
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Well, first of all, don't ever be afraid to ask for help. And don't have any pride that you don't need help. Because there are people who just they want to be feisty and show the world that the MS isn't getting them down.  And the MS has this little magazine a couple of times a year. And it's always really inspirational. But people should just-- if they need help, they should ask for it. It's good to be as active as you can for as long as you can. But there's no shame in eventually not being able to do the great activities you used to do.  And I mean, for us here, the asking for help was having people drive my kids around. But it's in a lot of ways we don't hesitate to ask. I can't even think of any examples right now. But yeah, I mean, I guess that's what I would say to people with MS.  

Pursue Your Goals and Stay Active  

Many people, like Dev and Dina, encouraged others with MS to “try to finish or try to accomplish all those things that you wanted to do, which you had aspired to do.” Kim says that it is possible to still be the person you want to be and do the things you want to do. Karen said, “I haven’t been promised any life or any day other than the day that I’m living right now, so I just live every day.” Kara warned against settling and many people, like Jean and Rhonda, advised people to keep active as best you can. Fred encourages staying active and involved with others by saying “if you can, and you're thinking maybe, I think you should say yes.” Kara, however, cautioned that if you feel tired then you should sleep.  

 

Raven recommends doing as much as you can for as long as you can. 

Raven recommends doing as much as you can for as long as you can. 

Age at interview: 52
Age at diagnosis: 28
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What I would advise people who get, have MS is, I would speak to the people that I wish I could’ve spoken to on the day that I was diagnosed. I would say to them, when you hear that, that you have multiple sclerosis, know that playtime is over and that life is in session, and you’ve been given a gift in the sense of you have the opportunity now to do as much as you can possibly do for as long as you can do it, to keep yourself in good health. So do your part. Do your part. And so, everything that you put in your body, in terms of food and exercise, and most importantly, the things that you allow yourself to see and to hear and to taste and touch, you know, have to be good. You have to make such a priority out of, at this point, of having a good life, because it has been, for me, it was just on that day, I was being told that I was not-- I was only going to be able to use this body for so long, and I was being challenged to do my part, to make my time with my body the best time that I could have with it for as long as I could have it, and I did the opposite. 

 

Debra C. says make the most of each moment. 

Debra C. says make the most of each moment. 

Age at interview: 54
Age at diagnosis: 41
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Even if you have a bad day or a dark day, you know don't forget about tomorrow, because things might look different the next day. But also, to make the most of every moment and enjoy the things you can-- can still enjoy. Don’t lose sight of the good things that you do have that are constant in your life.
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Never stop trying to achieve the things that you want to achieve, whether that be you know, on your own or through adaptive devices or through help from others. 

 

MS Doesn’t Define You 

One of the most consistently shared messages was that “MS doesn’t define you.” The people we talked with, like Elaine and Tiffany shared a hope that people could find a way not to let MS dominate their thinking and define their lives. Susan, Kara and Makenzie, said MS is “not a death sentence,” and Susan expanded by saying “you just have to learn within your limitations and grow in your limitations.” Kelsey said, “you'll get the hang of it eventually. And then you'll get to know your new normal.” 

 

Jennifer shares that MS means getting to define your own life. 

Jennifer shares that MS means getting to define your own life. 

Age at interview: 31
Age at diagnosis: 30
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I think my message for all newly diagnosed people is life doesn't end the day you get diagnosed. It feels like it does, and it felt like it did for a while, but you learn how to live your life with MS. Whatever that looks like, whatever MS brings your way, you have one life to live. These are the cards we're dealt, and there's a lot of life that you can live with it. So just to kind of keep your head up. You have a support group for the bad days, and then for the good days, we're also here to celebrate with you. But MS doesn't define you. You get to define your own life.

 

Jason encourages people to not care so much about what others think. 

Jason encourages people to not care so much about what others think. 

Age at interview: 31
Age at diagnosis: 24
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You have to accept it before anyone else will. You have to get comfortable with it. Once you're comfortable with it, life gets a lot easier, because if you're trying to-- if you're trying to hide this portion of yourself, this part of yourself, you're hiding something so significant that you're going to make life difficult. Because I used to not want to talk about it or tell people about it. If you're like me and you physically-- have something that's physically-- that shows physically, you can't hide that and see people. So, I was just holed up in my house all the time. I was being a hermit, and it was awful. It was terrible.  So, if you can accept what's going on to you, you're 10 times ahead of where you could be. It's going to make your life so much more enjoyable if you can accept it. And then other people probably don't care about it. You might think they care, but they don't, because you're not actually important, even though we like to think we're important. That would be my message, at the end of the day, it all doesn't matter because no one cares. And you have to focus on yourself and living the best life you can live.