Letter to the Media from an MS Patient

Why portraying a real picture of MS is important

Patient Expert
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Dear Mainstream Media,

Many years ago I watched a feature on Montel Williams where he was talking about his life with MS. He held out his hands, full of pills that he takes daily, and then said that he is in severe pain every single day. When I saw this, I was livid. I said to my Dad, “Now everyone in the world is going to pity MS patients because they think we’re all in pain all day and taking tons of pills.”

Montel didn’t represent me. He still doesn’t.  But what I couldn’t wrap my head around at that time was that although his story wasn’t mine, he did speak for some patients. Sure, there are patients out there who struggle daily, but there are also patients who don’t. So how do you make sure you’re telling the right story, or speaking to the right audience?

My problem with the way that MS is depicted in the media is not that it is portrayed incorrectly, but that it’s portrayed incompletely. When a TV drama series want to tug on your heartstrings and write in a tragedy, it often feels like a severe case of MS is their go-to.

Sometimes I imagine a bunch of writers sitting around a table trying to figure out what the worst possible fate of their character could be, and someone jumps up with excitement and exclaims, “I’ve got it! She’s got MS! The audience will feel super sad for her and will pity her as she struggles to do her daily activities. Her relationships with her family will suffer and then when she dies, it will be so tragic. It’s genius.” Massive eye roll.

I won’t say that is a completely false portrayal of someone with MS, but I will say, it’s not all of us. Patients living with MS run a huge gamut in terms of disease activity and physical disability. This range is never shown in the media. It’s always that massive tragedy. I know that melodrama generates good ratings and gets viewers more emotionally involved, but it’s not always real. It doesn’t represent everyone.

The tricky part is that picking one person in a TV show to represent all patients living with MS just won’t work. You can’t choose one patient’s journey to speak for them all because this disease itself is so unique to each one of us. I understand that choosing a patient with a more severe illness may seem like the best route cinematically, but you’re offering an unfair representation of MS.  At the same time, if you had a character running marathons and climbing mountains, you’d be doing the same. But there are patients with MS who can do that. I’ve run a half marathon, hiked Big Bend, and play roller derby. However, I do not represent all patients.

When creating a character who is also a patient, just remember that they’re still real people, not just sick shells of people. They will still have hobbies, love interests, goals, and for the love of Anette Funicello, they will still be happy at times.

From this letter, I can understand that it may seem like there is no good way to work MS into your TV spot, but there is a way to cover all your bases and represent more of the patient population. You can start by including more men and people of color. While white women do have higher rates of diagnosis, there are plenty of other groups of people with MS. Next, you can show a range of abilities and long-term effects over the course of your character’s story. Most people don’t go diagnosis to wheelchair in two days flat. In fact, only 12 percent of patients even use a wheelchair at all, so call the props department because you’re going to need something else.

When creating a character who is also a patient, just remember that they’re still real people, not just sick shells of people. They will still have hobbies, love interests, goals, and for the love of Annette Funicello, they will still be happy at times. Show a patient who dances but struggles with the steps sometimes. Show a patient who is a painter and uses their new hand tremors to create a new style that makes them super famous. And if you must put a character in a wheelchair, can you at least watch Murderball and have the character be totally badass?

Patients with MS do use wheelchairs, and canes. They have tremors and trouble with their balance. But they also keep living. Yes, some have more bad days than good, but there are still good days and those good days are just as important to put on your TV show.

If you’re looking to get an audience to connect with a character, you can do that through relatable happiness, not just tragedy. If you get this part right, you’ll get more buy-in from the patient population. By picking a chronic illness to feature, you’re automatically shining a spotlight on that condition, so do your research and get it right.

I will also challenge all the patients out there to applaud the media when they do get it right and to also be aware enough that all of our individual journeys cannot be put on the screen. If a character with MS does something you cannot, it doesn’t mean it’s not realistic, it just means it’s not realistic for you.

What I didn’t understand about what Montel was doing years ago is that he was trying to get the public to see the struggle of someone living with MS. At the time, I didn't have a struggle living with MS, and I still don’t on most days. What could have strengthened his statement was also noting that each patient is different -- that although those pills and that pain is part of his journey, every patient out there has his or her own journey to navigate.

I ask that as a producer or a writer, you put as much effort into making a character's life with MS look real as you would into a computer-generated image (CGI) dinosaur, car chase, or explosion. The payoff will be just as high and you won’t break your special effects budget.

Sincerely,

Jackie Zimmerman

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