MS awareness roundtable.

MS Awareness Week is March 5-11 this year, to be marked by chapter events and new public service TV, print, and billboard ads across the nation. Awareness means understanding this disease. InsideMS brought together six people with MS to talk about what people in their lives get or don't get about MS--and how MS awareness affects their personal experiences.

THE SPEAKERS:

Chris Armistead, law student, Georgia, living with MS 1-1/2 years.

Cheryl Chatman, motivational group leader, Florida, living with MS 16 years.

Maria Reyes-Velarde, MD, PhD, staff of National MS Society, New York, living with MS 7 years.

Benito Santiago, student at the University of Rhode Island, living with MS 1-1/2 years.

Anne Straub, Feldenkrais practitioner, New York, living with MS 23 years.

Jennifer Vanetta, mother, Washington state, living with MS 7 years.

The following was edited from a telephone meeting that took place in October. Gary Sullivan served as moderator. To read the unedited transcript, go to nationalmssociety.org/ MSRoundtable or call 1-800-FIGHT-MS and request a copy.

What's been the most difficult aspect of your MS to get across to close friends and family members?

ANNE STRAUB: Fatigue. Just talking about what fatigue is like and how it affects me and the whole range of difficulties it really imposes on my day-to-day life.

People sometimes believe that you ought to be able to push yourself. Or, conversely, "Oh, don't do anything, because it'll make you too tired." I've had it come at me from both directions.

CHRIS ARMISTEAD: Predicting how things are going to go from day to day. People will ask me, "Do you want to do this in three weeks, unless that's too much for you." I have to remind them that I'm not going to feel exactly the same every single day.

JENNIFER VANETTA; People try to sympathize my family and friends--and I appreciate that, but they don't quite understand how the tingling feels, say, or the tightness. That tightness around my tummy is hard to explain unless you've felt it.

CHRIS ARMISTEAD: When I have tightness it's not pain, but it feels like I'm wearing an elbow length glove on my right arm. Or it feels like I've got rubber bands all the way around my leg. I just wish that more people in my family realized that it's not necessarily something that can be easily articulated.

CHERYL CHATMAN: I'm legally blind. I lost my vision in 1990, shortly after I was diagnosed, when I was 25. And I still have people showing me clothes and saying, "Cheryl, look at this beautiful dress."

GARY SULLIVAN: Do you think that people just forget?

CHERYL CHATMAN: Sometimes. But it's also denial. My mother is a huge volunteer at our Society chapter. But it took a while for her to get there. She couldn't believe that I had MS. And part of that was because she blamed herself.

MARIA REYES: My mother cannot mention the name of the disease yet. It's been seven years, but she still doesn't accept the fact that I have it. She's at the point now where she can talk about "the disease that you have," but she still doesn't put the name on it.

BENITO SANTIAGO: I've had to tell people that MS doesn't have anything to do with your muscles, it has something to do with your nerves. I don't know how to put it, especially to my parents.

They live in Puerto Rico, and they want me to visit. But I don't really want to bring my syringes on the plane and get arrested by customs or something. (Laughter.) I make a joke of it now, but it's true.

What do you wish that your employer understood about MS?

CHERYL CHATMAN: My husband is my boss. (Laughter.) We work together, traveling around the country facilitating couples retreats for people with MS.

JENNIFER VANETTA: When I go in for interviews, I don't tell people. I just don't want to be discriminated against. People might think, "I don't want to hire her because she'll call in sick all the time and will be out for a month."

BENITO SANTIAGO: I used to work as a campus admissions representative in Boston. The job was basically just to get students enrolled in the school--it was a sales job. You had quotas--a certain number of people that you had to get enrolled.

My boss wanted to give me more hours. My nurse-practitioner and my doctor faxed a letter to my job saying that I could not work too many hours. They wound up letting me go because of my "numbers."

MARIA REYES: You're on time, you do your thing, but the minute that they see you using a walker, it bothers them that you're using it in the office.

When I was diagnosed, I told my boss, whose response was, basically, "I could care less that you have MS; you have to comply and you have to come to work." I went through the same thing as Benito: My doctor sent a letter and talked to my boss. It just didn't work. They didn't understand that with a little compromise you can do your work with relatively no disruption to the office.

CHRIS ARMISTEAD: When I was diagnosed, I told my employers. I was working at a law firm as an underling to a paralegal. My work was in document production, copying thousands of pages, boxing them up, taking the boxes to different places. All of a sudden, the person who oversaw me wanted me to be working at my desk more and not moving boxes that much.

I wound up telling my boss that when I say that I can do something, I mean it. MS was on their mind more than it was on my mind. (Laughter.)

ANNE STRAU8: I have been in private practice for quite some time. But when I was diagnosed, I was working for a couple of contractors. The main contractor was very concerned about me as a person and was very accommodating. I ended up leaving because I was just having too much difficulty.

I have clients now who've gotten accommodations up to and including working from home or using special dictation software and things like that. Some people seem to be able to pull that off better than others.

What do you wish your next door neighbor understood about MS? What are the silliest things that otherwise sensible people have told you about MS?

CHRIS ARMISTEAD: I think people around me are really confused by my MS because I lift weights a lot. I think sometimes people wonder, is this really a problem, or not? Is this the sort of thing that he's faking?

I've also had a couple of people tell me that if I get my fillings pulled I'll be cured. I have 13 fillings, so I'm not looking to do that anytime soon. (Laughter.)

MARIA REYES: I love to work in my garden. One weekend I may be working like crazy, but the next I'm using a walker. And I can hear my neighbors thinking: This woman is really crazy, what's going on?

BENITO SANTIAGO: I take public transportation. And when I'm walking from the bus stop and my neighbors are out and they see me dragging my feet, they probably think, like, "Oh, check him out again, he's actually drunk."

CHERYL CHATMAN: I do feel that it's important to get across that MS is neurological. I like to empower my neighbors by telling them what MS is and what it does. A lot of them are genuinely interested. In fact, some of my neighbors have asked me to talk with a co-worker or someone else they know who has just been diagnosed.

I used to cry when I would hear that someone had said about me: "She can see what she wants to see." That was devastating. To be honest, God helped me make peace with that. Also, a positive attitude. It's a key to success with any chronic illness.

JENNIFER VANETTA: I tell people that MS is an auto-immune disease and I explain how my immune system is attacking my brain and my spine and my myelin, which then causes these symptoms that I have. I really want them to know exactly what's going on.

When I first was diagnosed, I thought I had scoliosis, curvature of the spine. I didn't really understand and I've actually met a couple people who have thought that's what it was, too.

ANNE STRAUB: I think people now have a little better sense of what an autoimmune disease is. But then sometimes they jump right to AIDS. I usually use the myelin-as-insulation-on-the-wire metaphor. I have learned to tailor my explanation to specific people.

If I don't use my wheelchair for some reason and I'm walking, some people see me and it's like: "Miracle? You're better! You were cured?" I would really like not to have to even address that if I could avoid it.

What would good community awareness really look like where you live?

MARIA REYES: Well, I just had a very bad experience with a taxi, and it just goes back to what we've been talking about, that people need to understand more about this disease.

I called the cab while I was waiting in front of the station, so I told him, "I need to be picked up."

And he said, "Well, walk over."

I said, "I can't walk over because I have MS and I'm using a cane and I feel really tired, could you come over?"

And he said, "You should be OK with a cane, just walk over."

Why do I have to give an explanation to a taxi cab driver for him to come and pick me up? I can't walk two blocks.

Another thing that bothers me a lot is the clutter in stores. Sometimes they put so many things in the aisles that you can barely walk through the aisles normally, and it's worse when you're using a cane.

ANNE STRAUB: Or using a chair or a walker.

MARIA REYES: They need to know that they have to open those aisles up because there are people in their community who can't navigate them. It should be common sense.

BENITO SANTIAGO: I'm thinking about my gym. They don't have any elevators to get up to the second floor.

ANNE STRAUB: People will tell you that something is "wheelchair accessible" and you get there and it's not. I've given up on that because they just don't know what that means. I ask if there are steps and they say no, and you get there and there are two steps up to the entrance. It might as well be Mount McKinley because they're not possible for me.

CHERYL CHATMAN: I've had people curse me out when I've gotten out of my car. My husband and my mom will get out, and then I'll get out, and even though we have a handicapped placard, there's no wheelchair. I use a cane, but it's not always extended out. That reaction would be avoidable if there was more public awareness about MS.

CHRIS ARMISTEAD: When my MS comes up in conversation, and when somebody responds with things like, "What kind of MS--is it relapsing-remitting, is it primary-progressive?" Or "How often do you have MRIs?" I feel like I could hug that person. It's just like, oh, thank you so much for not making me explain what MS is. (Laughter.)

MARIA REYES: Have you really found a person like that?

CHRIS ARMISTEAD: I actually have--somebody who's involved in health law. Awareness is not just knowing what MS is, but what MS does. That it is an individual sort of thing and that different people have different things happen to them because of it.

What should be done to change underlying attitudes?

MARIA REYES: Big campaigns using more visual materials! Everybody knows about muscular dystrophy because who hasn't seen the telethon?

CHERYL CHATMAN: More public service announcements on TV. There should be huge billboards that say "I-800-FIGHT-MS."

MARIA REYES: Public service announcements on TV are very powerful. They're running one right now in Puerto Rico. When my mother saw it, she called me and said, "Hey, there's something about MS on the TV!" I mean, she was so excited. She could actually feel free to talk to her friends because her friends have seen the PSA on the TV.

CHRIS ARMISTEAD: The best direction to go would be to give people a huge diversity of images. So people will say, "Wait, I saw this one ad and this younger person was riding in a scooter and then I saw another where someone was running a long-distance race. And then I saw another ad with a Dad in his 40s and he had a cane."

This is not a disease that's easy to pigeonhole and I think that everyone should understand that.

CHERYL CHATMAN: During a couples retreat Len and I did recently, a woman came up to me afterward in tears, and said: "I was diagnosed more than 20 years ago and this is the first MS-related program I've attended." With greater awareness, people would feel more empowered to do what they need to do for it.

JENNIFER VANETTA: Here in Seattle I've seen billboards promoting the FaceofMS.org Web site, and I thought that was great, that people might go and read people's stories. lust like what you were saying, Chris, because everybody's so different.

BENITO SANTIAGO: When I was sending e-mails out for the MS Walk--last year was my first year doing that--I would include a link to my story at FaceofMS. org. Most of the people I sent it to didn't know much about multiple sclerosis, but if they clicked and read around on the site, they started to get the picture.

CHERYL CHATMAN: It's so easy for anyone with a chronic illness to feel like you're alone. The way I feel is that we're family, now. All of us. We're family taking care of family. That right there can be very empowering.

FaceofMS.org

Become part of the face of MS. Share your story and view the stories of others. Every voice matters. Every story counts. Visit FaceofMS.org.