When you are diagnosed with a serious condition, it’s natural to spend days, weeks, months, and years researching every detail about symptoms, treatments, potential causes, cures, etc. In time, you become far more knowledgeable about the condition than your regular family doctor. That’s just the way it goes. Family doctors don’t have the time or resources to learn all there is to know about any one condition. So, that’s your job. And I can tell you that, particularly here in smaller cities and towns in Canada, even getting access to a specialist once a year is extremely difficult. You become an expert because you have to.
It’s interesting how knowing a lot more about your own condition can kinda ruin the entertainment of medical TV shows sometimes. For instance, when I was first diagnosed with MS, the TV show House was still airing. We had enjoyed it, though I knew it was not exactly accurate. But shortly after my diagnosis, I just couldn’t watch it anymore. It suddenly became sickeningly evident that the show itself was almost a smack in the face when it comes to actual medical treatment.
But I’m finding it goes even beyond just medical shows. Too many TV shows try to use MS as a “human interest story,” but fail miserably at raising any kind of genuine awareness. Many end up promoting false information, which leads to more difficulties for patients because they are so misunderstood. Yes, these shows are just fiction. But people remember what they see and assume it’s been properly researched and at least somewhat accurate. That’s pretty dangerous, and can so be easily avoided with even a bit of actual research on the part of the writers.
Take for instance: Scorpion. Now, to be sure, this show is already pretty ridiculous fantasy, though it claims to be based on the life of the real Walter O’Brien. In truth, it is more like Goonies, but with grownups. It’s fun and silly, and has a pretty decent cast. It’s not good programming, but something that can provide some light entertainment if you’re bored and there’s nothing else on.
But then came the introduction of Walter’s sister Megan. Megan was supposedly diagnosed with MS at a very young age and had been living in a hospital for years. (Obviously the point of this story line is to explore Walter’s need to solve or fix everything, and his helplessness when it comes to his sister’s condition). First of all, people with long term chronic conditions like MS actually end up in nursing homes when they can’t take care of themselves anymore, not hospitals. But, of course, showing a beautiful young woman living in a community of very elderly patients, most of whom have dementia is… well… pretty tragic, sad, and uncomfortable. It would have been too real for a fluffy TV show. I get that. But then she “escapes” from the hospital for a weekend away hanging out in the “real world,” even climbing a ladder at one point to hang some decorations. Thing is, while being in full time care might make a patient feel like a prisoner, a long term care facility would encourage her to get out and spend time with friends an family whenever possible. And, of course, the way she was portrayed, she would not have qualified for long term care, but would have been encouraged to live on her own with some additional support.
If that was the only issue, I could even let it go. But then there’s an episode where Walter discovers some new experimental drug trial that he wants his sister to enroll in. She doesn’t want to because she knows about the risks. They portray it as if not entering the trial means she’s given up on life, and ultimately Walter encourages her to do it anyway. Yeah, in reality, those trials often have casualties; severe side effects, sometimes permanent. And sometimes people die. AND most of those trials end in failure and are eventually abandoned. So, what a horrible thing to promote to the public. Like many of you out there, I have some family who are frustrated with me for not just jumping on the “Disease Modifying Drug” bandwagon. A show like that just encourages them to be even more upset with me, not trusting that I have done my research and have chosen to avoid DMDs (at least for now) specifically because I’m doing my best to take care of myself and hope for a better future.
(Now I have to admit here that I gave up on watching Scorpion, so didn’t watch the resolution of Megan’s story line. I understand that she and Sly get together, which is sweet, but that she dies soon after. But I don’t know the details or if anything they presented later on was decent.)
Worse, far too often these kinds of shows suggest that MS is a death sentence and that doctors can give a prognosis. I’m guessing that’s largely due to a complete lack of research on the part of the writers. Yes, some people die from MS. Many more die from complications caused by the medications. But most don’t die from it! And no doctor can give a prognosis. MS is a “snowflake disease,” meaning each patient presents differently. Some patients end up in a vegetative state like Annette Funicello did. Some end up in a wheelchair. Some never need more assistance than from a cane.
Here’s another example of a terrible representation. I was recently watching the TV show “Lie to Me,” and honestly I started to get that yucky feeling that the MS “discovery” was quickly approaching as the lead character realized the expression the man’s face was the result of an involuntary muscle twitch. Sure enough, he calls the man out on it and says that his muscle twitch was the example of “late stage Multiple Sclerosis.” What? A facial ripple is “late stage?” Who made that up? Good grief. Something like that is often the first symptom that leads to a diagnosis, not a final stage symptom (whatever that may be).
Then the man says the doctor told him he only has a few years to live. Yet, he’s working full time in a labour intensive job with only minor symptoms. How sad! Imagine watching something like this and then getting your own MS diagnosis! Now you’ll think you’re going to die soon! Ugh!
Next show: Towards the end of the most recent season of Elementary, Captain Gregson’s girlfriend tells him she has MS. Initially she breaks up with him without telling him because she doesn’t want to burden him with what she may face in her future. That’s actually pretty realistic. A lot of relationships, including marriages break up because of the stress it can put on both partners. Once he presses and finds out the diagnosis, he goes to Joan to get more information because she’s a doctor. Again, that’s pretty realistic, though surgeons usually know even less about MS than family doctors do. I remember the last time I had major surgery and both my surgeon and anesthesiologist approached me in the hallway as I was waiting to be rolled in for the procedure. Both were very concerned because they noticed in my file the MRI results from about a month prior. They had no idea what they meant and were concerned that we shouldn’t go ahead with the procedure. I had to explain the results to them! Moral of the story: don’t assume your surgeon friend knows much about MS, lol! But none the less, in real life, if you have a friend in the medical field and want to know more about a particular condition, it makes sense to talk to them. So, that’s fine. Her response was OK as well, for the most part. She explains that MS is serious and basically gives him the worst case scenario. Again, that’s fair since he needs to know what he might be in for if he decides to continue with the relationship. On the other hand, this didn’t sit well with many MS patients because again it paints the condition in the worst possible light. It doesn’t represent all, or even most of us. So that’s where it may fall short a bit.
We shall see how the story unfolds in coming seasons. I’m more hopeful that they’ll do a better job than the other shows I’ve mentioned. At the end of the episode, Aidan Quinn even did a little plug for MS awareness, which was nice.
Those are just the shows I’m aware of that have MS storylines. Have you seen others? Have you seen any that actually did a good job of bringing awareness?