Skip to content

Put On a Happy Face: Community TV

  • Richard Cohen:

    Ann Marie Johnson was diagnosed with multiple sclerosis in 2002. Ann Marie works for New York in human services. Now disability no longer is somebody else’s issue. Ann Marie, I have to ask you, you refer to being outed when you and I were talking; is your illness a secret?

  • Ann Marie Johnson:

    It’s not necessarily a secret, it’s a need to know. There are many in my workplace that do know. And then there are some people that don’t know.

  • Richard:

    But you’re very selective about who you tell.

  • Ann Marie:

    In the workplace. Outside the workplace, it’s interesting. I tell anybody and everybody, but my workplace is a little bit different.

  • Richard:

    You described yourself on the phone as a poor, single, black chick from Brooklyn facing this illness. Is it scary?

  • Ann Marie:

    It’s extremely scary. You know, when I first found out about the illness, all I knew about it was Montel Williams had it, and, Richard Pryor. So immediately, it was like, OK, these are affluential rich men and what does that mean for me? What does that mean for me as someone who’s single, who’s definitely not rich, living in Brooklyn, no kids. I’m an only child. My parents passed away when I was young, so I don’t really have much in terms of family. What does this mean? How am I going to live? And my symptoms, when I first was diagnosed, was very different from, you know, how I appear to be today. You know, back in 2002, I couldn’t walk. I couldn’t walk, I couldn’t hold a cup, I couldn’t button a shirt. The person you see today is definitely not the person I was back then.

  • Richard:

    When you looked in the mirror, did you see a different person looking back at you?

  • Ann Marie:

    The Ann Marie prior to MS was the vivacious risk taker, “go-get-em girl” type of woman. After I was diagnosed, simple things that I was able to do, I couldn’t do anymore. Other things, you know, in terms of remembering things, was not as sharp as they used to be. Putting on a button-up shirt, I just ... all these things that a lot of people take for granted, that becomes part of their normal routine to do was very, very hard for me to do. You know?  I just ... I was never at that type of place before, you know? I never thought of myself as ... in some respects, I kind of considered it being weak. I was like, you know, am I weak, am I, you know, less than? I didn’t feel a hundred percent. Not at all. Between the fatigue, between ... just the energy that it takes to keep myself, I guess, normal, in the respect of making sure I hold the cup, making sure my balance is right, I mean, there’s a lot of energy that goes into that. And trying to keep that all together and then entertain myself in the midst of the moment, I just chose ... a lot of times I just told my friends, “You know what? I’ll pass. I don’t want to go out.” And one day of not going out turned into several days of not going out, which turned into weeks, which turned into an entire summer.

  • Richard:

    It sounds like you’ve been isolating yourself.

  • Ann Marie:

    There was a time in my life that I was. It was too much to explain to my friends because it got to a point where, as much as I would say to them, “I’m not feeling good,” I guess they see me and they want to believe everything is OK. And I look like everything is OK. They couldn’t understand that. When I’m saying to them, “Well maybe I can, I don’t know if I want to do this, I’m tired.” It was just best to just say, “No.” Stay home, go to work, try to fit a routine in my life as normal as possible, because to explain was just too much energy. Just too much.

  • Richard:

    How has your sense of self changed?

  • Ann Marie:

    Whew! I feel as if a lot of times I live on the edge. Because my symptoms back in 2002 were so dramatic and happened so quickly, I feel as if every day I wake up wondering, you know, often, is today going to be like 2002? You know, granted, I’ve kind of improved quite a bit since 2002, but again I still have some sensations, but it still doesn’t get, you know, that feeling of “is tomorrow going to be the day like 2002 New Year’s Eve.” It’s scary, and it can get in the way in terms of my hopes, dreams, and aspirations.

  • Richard:

    You said that you dreamed of being a wife and a mother and then MS took that away from you. How is that?

  • Ann Marie:

    You know, as someone at thirty-ish [LAUGHS], the whole dating and relationship thing is already hard. You know, you’re already going through, you know, self-esteem issues and society pressures. Then you add something like a chronic illness, MS, to it. I mean, you meet someone, you enjoy their company, when do you say, “Oh by the way, I have MS?” [LAUGHS] You know, and then a lot of time, society’s understanding of the illness itself is so limited that they think of the worse-case scenario, when you tell them that you have MS. I mean, I’ve dated someone for a significantly long period of time and I thought that things were going to, you know, were fabulous between him and I. And he was well informed in terms of me having a chronic illness. As a matter of fact, he came with me to an awards ceremony that I had attended one time. And things were great. And then one day he woke up and said, “You know, I don’t know about this MS thing, if I can handle this.” What do you say to that? It’s one thing if you say, “Well, you know you’re not ... I like you but you’re not affectionate.” OK, you can try and become more affectionate, but there’s other things in a relationship you can fix. You can’t fix a chronic illness. You know? And when he said that, it just made it real in that if he feels that way I’m sure there are many others that feel that way. I mean, you look around and, unfortunately, you know, society is very influenced by TV. You don’t see, you know, individuals with handicaps and disabilities on TV. You definitely don’t see them in romantic, you know, moments.

  • Richard:

    Do you feel less attractive?

  • Ann Marie:

    I have good days and I have bad days, but I’ll definitely say after my diagnosis I have had a lot more bad days, with the constant reminders of I don’t feel pretty, I don’t feel 100%, I don’t feel feminine. I don’t.

  • Richard:

    Isn’t a lot of that in your head?

  • Ann Marie:

    And you know, I’m sure it is and that’s one of the things about MS in that there’s an emotional aspect to it and a psychological aspect to it as well as the physical, you know? And I think it’s important that as, you know, you live your life with this that you focus on all three, because it’s having balance with all three that really helps with your healing. You know, um, I’ve come a long way, cause that first year I was at my worst. I was totally at my worst. You know, we talked earlier in terms of isolating, you know, I did a lot of that. Seven years later, you know, I’m out again. I am out with my friends. I do go out. Haven’t really quite captured ... got the whole dating thing yet, bu, I’m not as quick to blame it on MS as I used to be. I’m trying to get back to a normal life, as much as what normal is anymore. You know, if anything, I kind of call it creating a new me so to speak, but I still have ... I’m still on a journey. I’m not there yet and it’s only been seven years, and who knows how long it’ll take.

  • Richard:

    You said, you told me that you felt broken. Can you be fixed?

  • Ann Marie:

    Yeah, but, often, when you think of fixed, fixed is to a ... I want to be fixed and better. Maybe that’s what I’m trying to say. I don’t want to just be fixed, I want to be fixed and I want to be better. You know, don’t just put a Band-Aid, I want a pretty Band-Aid on it. [LAUGHS] You know? And I don’t want a quick fix. You know? I want my MS experience to be more than just Ann Marie with MS. I want my MS experience or journey to be “Hey, you know that girl over there? She’s smart, she’s bright, she’s intelligent, she’s beautiful, she’s on top of her game. Oh yeah, by the way, did you know she has MS?” That’s what I want.

WebMD "A Patient Voice" Community