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This Is What MS Looks Like

Written by Mary Baucom | Photographed by Anthony Perez and Teresa Lieh on March 28, 2016

It comes in different forms and stages, in all shapes and sizes. It sneaks up on some, but barrels towards others head-on. It’s multiple sclerosis (MS) — an unpredictable, progressive disease that affects more than 2.3 million people worldwide.

For the below 9 people, MS doesn’t define who they are, how they act, or how the world sees them. Their lives may have changed since being diagnosed, but their stories are unique to them and them alone. This is what MS looks like.

Kristen Pfiefer, 46
Diagnosed 2009

“I don’t want people to look at me and say, ‘Oh, she’s the one with MS. We shouldn’t give her that job because she might get sick.’ I don’t want people making judgments about me. I know what I can do and what I can’t do. It doesn’t have to be weakness. And I think that’s what a lot of people who are diagnosed see it as. And it doesn’t have to be. … I choose to have it make me strong. … You have power if you choose to take it. It’s kind of like a war. In a war, you can choose to hide and pray that it won’t come to you or you can choose to fight. I choose to fight. I don’t believe that I’m powerless in this situation. I don’t believe a wheelchair is in my future. I believe I can work against it and I do everyday.”

Jackie Morris, 30
Diagnosed: 2011

“Just because you don’t look sick doesn’t mean that you’re not sick. I guess I’ve gotten pretty good about not showing that anything is wrong even though on the inside every day, it’s hard just to do everyday things. I think that’s the hardest part, unless you have outwardly symptoms like if people have a cold or if they have something physically that you can see wrong with them. If they don’t see it they don’t imagine that you actually have something wrong with you. … I let it be something to push me to make changes in my life and be positive and do things that I probably wouldn’t have done before. Because even though I have RRMS and I take medication and it seems pretty much under control, you just never really know. I don’t want to regret not doing things because I couldn’t do them while I could.”

Angela Reinhardt-Mullins, 40
Diagnosed: 2001

“I think the moment that I found out I became a ‘yes’ person. I’m finally starting to say ‘no.’ … I have to prove that there’s nothing wrong with me because people treat me like there’s nothing wrong with me. … There is something wrong but you can’t see it and that’s the hardest thing.”

Mike Menon, 34
Diagnosed: 1995

“To me, there’s somebody out there that’s worse than me that’s doing more than me. So I can’t really complain about what I’m doing now because I know there’s somebody else out there with MS who is worse, but they’re still doing the things that they have to do. And that’s the best way to look at it for me. It could be worse. People have seen me at my worst and people have seen me kind of close to my best. Two years ago I was in a wheelchair and I wasn’t walking and I had a really bad episode. And 20 pills later, people see me and they’re like, ‘There’s nothing wrong with you.’… I’m in pain all day, every day. I’m just kind of used to it. … There are days that I sometimes don’t want to get up and just want to lay there, but I’ve got things to do. You kind of have to push yourself a little bit, and have the drive a little bit. If I sit here, it’s just going to get worse and I’m just going to get worse.”

Sharon Alden, 53
Diagnosed: 1996

“MS looks like everything. It looks like me. It looks like my sister’s friend who started running marathons after her diagnosis. And after having to stop working because of her MS, she was later training for a marathon. It’s also people who cannot walk straight or can’t walk. I have friends in wheelchairs and they’ve been that way for a while, so it looks like everything.”

Jeanne Collins, 63
Diagnosed: 1999

“I think MS looks like everybody else. Everybody you meet probably has something going on in their lives and you just don’t know about it. And I think MS is largely an invisible disease until you get into the later stages. That’s why I don’t think MS really looks like anything. You might see a cane. You might see a wheelchair. But for the most part you look like everybody else. You might be in a lot of pain and nobody around you even knows. … It’s important to let others see that you don’t have to give up. You don’t have to wallow in pity and not get out there and not enjoy what you enjoy doing.”

Nicole Connelly, 36
Diagnosed: 2010

"Sometimes it does feel like being a prisoner in your own body. It’s not being able to do things I’d like to do and feeling like there are things I shouldn’t do. I have to remind myself not to push myself too far, not to overdo it because I then pay the price. I’m self-conscious in thinking that people think ‘I’m stupid’ or people think that ‘I’m drunk’ because there are certain times when I’m not doing as well as others. I’d rather have people know what’s wrong but I think that’s the hardest thing for me is that people don’t understand.”

Katie Meier, 35
Diagnosed: 2015

“People have a lot of misinformation about what MS is. They immediately think you’re destined to be in a wheelchair and all that sort of stuff, but that’s not really the case. [Sometimes] it can look like you’re completely healthy and living a normal life, but you’re struggling with all kinds of symptoms.”

Sabina Diestl, 41, and her husband, Danny McCauley, 53
Diagnosed: 1988

“I can’t move at all. I’m not contagious. It’s not fatal. … You can still be happy with MS.” – Sabina

“I met her when she was 23 and at that time she wasn’t walking, but we fell in love anyways. At the beginning I tried to work and be a caregiver but it became a full-time job. Being the support for someone with a progressive disease is life-changing.” – Danny

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