#MSISPERSONAL

ANN MARIE: Hi. This is Ann Marie. And we are here today to talk about how multiple sclerosis, or MS, is personal.

JARRED: MS is personal to me because it's my life, it's my every day. I live it. Just because you don't see it doesn't mean that something's not wrong with me.

My wife went through breast cancer. She made it look super-easy. And seeing her go through it, it really made me think to myself, man, you know, if she can go through it, speaking about my challenges with my MS or my experience with MS and it being personal to me, I can be more open about it.

VICTORIA: MS is personal to me because one time my uncle told me to be a victor and not a victim. And I feel that MS came into my life to really show me that I had that ability, because I am not a victim, I’m a victor.

ANN MARIE: I’m hearing you and I could totally relate. I mean, MS is personal to me because, like you, it’s also a part of my journey, you know. For me, MS stands for “mighty sexy.” A lot of people look at that and kind of go, “Huh?” But my journey with MS really had me questioning all that is Ann Marie, from my femininity side.

DR. WEST: MS is personal to me because I have watched my mother struggle with it for most of my life. MS is personal to me because I see my patients dealing with this illness every single day and I want to make their life better for them and I want to try to help them.

CHELSEY: MS is personal to me, because I was diagnosed pretty relatively young, and it made me feel a lot different from a lot of my peers.

My career too. Being a bartender and running a craft bar, it's just a little different. I don't meet a lot of people who are in the service industry who are dealing with it on a daily basis.

DELIA: MS is unique for every person. And for me, it’s all about connecting with myself and listening to my body.

Whatever experience I have in my life with different symptoms at different moments, it’s all in me, and I am the only responsible person to take care of myself. That’s why for me MS is personal.

Everyone’s experience with multiple sclerosis (MS) is different. Your healthcare provider should always be your primary source of information. The people in this video are paid spokespeople for Biogen.

DR. WEST: Hi, my name is Dr. Timothy West and thank you for joining us today. I know that MS is personal for each of us, and we all work with our own healthcare teams in different ways.

As a medical professional, I have to say that a lot of times in medicine, we just start treating disease. We treat the problem, rather than the person. When people ask me why is MS personal, I start thinking about all of the individual people that I have met who have MS.

I'm curious as to how you found the team that you're working with and how that went?

JARRED: My doctor's been for—since I was 18, and I'm 34 now. He's great. If I need medicine or if I'm having issues, they're just a phone call away.

I started doing telehealth because my doctor is in Atlanta, Georgia, and it would take, you know, a couple of hours to, to drive there and then another couple hours to drive back. So by the end of the day, I mean, you're worn out. So I see him personally every six months or being able to do the telehealth visit and see him that way, it's definitely been a blessing having telehealth.

DR. WEST: So, in our clinic, what we've noticed is telehealth has a very important use, especially for people like Jarred who have to travel long distances.

DELIA: I’ve been seeing my neurologist for almost 20 years, the same one. My experience with him, has been one of almost a friendship, after so many years. He knows me well. He actually wishes me the best always. And every time I go, I always bring my list of questions or concerns, so I don’t forget.

And for me, it makes me feel comfortable, because I see that he cares for me.

DR WEST: I used to have a mentor say, "Nobody cares what you know until they know that you care," which I think is true on many levels, right.

CHELSEY: Trust is so important. And even the small little things, outside of those 20-30 minutes of seeing face to face, it’s the small things.

I started out at a big hospital when I first got diagnosed. It was a new doctor every time I saw, it was a new team of students who were coming in to learn about me because I was the 24-year-old with MS, so it just was very uncomfortable and very uneasy.

When I was having a little struggle trying to find the right healthcare providers, um, it took me a few years to kind of find the right people, the right doctors, and to figure out—just to figure it out for myself.

Everyone’s experience with multiple sclerosis (MS) is different. Your healthcare provider should always be your primary source of information. The people in this video are paid spokespeople for Biogen.

VICTORIA: Hi. I'm Victoria, and I'm here today with Ann Marie to talk about health equity within the MS community.

To me, health equity is what I like to describe as allowing everyone to have a fair opportunity for quality healthcare as it relates to this subject matter.

I was diagnosed at 25. In my research, I really didn’t see Black people. I didn’t see Black women, and I definitely didn’t see Millennial or, you know, young, youthful women that were diagnosed.

So, I was struggling. I felt very invisible. What was your experience like?

ANN MARIE: I remember, for me, I would pick up, different periodicals and I wouldn’t see anybody that looked like me. And, like you said, you know, there wasn’t that much being shown about us. Too often, I would go to a conference regarding MS, and I would find myself in places and spaces where I was the only Black person.

VICTORIA: Yeah.

ANN MARIE: You know? And that, you know, that you talk about, in terms of feeling alone, oh, absolutely, you know. When you don’t see, you know, representation matters.

VICTORIA: Representation absolutely matters. Because it’s the truth, and it’s still happening today. I definitely want to dive more into just overall medical mistrust and addressing it and what that means to the MS community. Medical mistrust is not just specific to our community. But I think it's definitely important to speak on the fact that since MS is such an unpredictable illness and then on top of that we're Black and then on top of that we're women, I mean, medical mistrust is rampant in my mind.

Can you talk about any experience that you have or just your thoughts on medical mistrust?

ANN MARIE: I've had my doctor for many years. We have a very good relationship. This particular day when I went for my appointment, I was sharing with her, you know, some of what I was feeling and turned to the nurse.

You know, this is my nurse who I've known for years, and we've had a good relationship, you know. I thought you were listening to me. But in that moment, I realized she's not listening, you know, and it just made me think, you know, what about others? I know for me, if you're not listening to me, I'm not going to talk to you.

VICTORIA: If you feel like you won't be heard or won't be believed, then you are probably going to shoot down the idea of seeing a doctor in general.

ANN MARIE: And, you know, what does that mean as a patient? You stop going to appointments. You miss a week, you miss a month. Next thing you know, you're sick.

VICTORIA: The domino effect.

ANN MARIE: Exactly.

VICTORIA: Yeah.

ANN MARIE: And that happens too often because of something as simple as mistrust.

As long as I have a voice, I'm here to really make sure everyone knows what these concerns are and, more importantly, as you said earlier, let's talk about a plan to bring about equality or, more importantly, equity into this situation.

Everyone's experience with multiple sclerosis (MS) is different. Your healthcare provider should always be your primary source of information. The people in this video are paid spokespeople for Biogen.

DELIA: Hello. My name is Delia. We are here today to talk about support. And what does that mean to you?

I was the one who volunteered to teach mindfulness for the different support groups here in the island.

For me, to teach mindfulness, for MS patients, was a way to give something that was working for me.

Sometimes we, we just lose it. We lose hope. We get tired. We get frustrated. But when you learn the skills of mindfulness, you just open yourselves to the experience of whatever is present. And that was my way to give something to this community.

DR. WEST: I think that what Delia is saying is wonderful because when you go to these groups, you can be open about the things you’re struggling with. But also, you can be open with the ways in which you have overcome things or learned to get around things.

VICTORIA: When I was diagnosed, I felt very invisible and very alone. I was the only person in my family to be diagnosed with MS, and I wasn't really seeing myself in research. So, I felt extremely, extremely alone. And what do you do when you feel alone? You find community. You find your people.

So I formed a nonprofit organization, which is a support group in its own, but it's also just overall an awareness organization.

Our tagline is “Redefine what sick looks like.” And I always do my hair, like whip my hair when I say that, because I'm redefining what this looks like. There is no box that we're in. We come in all shapes and sizes.

ANN MARIE: For me, you know, I was just looking for information for myself. Just trying to wrap my head around what does MS mean. But what does MS mean for me?

In my quest of trying to find a support group, there weren't many support groups specifically for people of color.

I did eventually find one. The person who was facilitating this particular group unfortunately wasn't able to facilitate that group. And I took it upon myself to volunteer, and I took over that group for many years.

DELIA: And, as you said, in, when you are part of those groups, you don’t feel alone. You never feel alone because you know so many people and we are all friends.

Everyone's experience with multiple sclerosis (MS) is different. Your healthcare provider should always be your primary source of information. The people in this video are paid spokespeople for Biogen.