“The Misunderstood, Ignored, and Forgotten Disease”
April 30, 2012
I recently asked the question “How do people without MS react to you?” to an MS discussion group I belong to. Their responses? The same I have been hearing for decades: We feel misunderstood, ignored, and forgotten by so many people.
Why do we feel this way?
First, on the outside so many of us look good unless we have some kind of walking aid to indicate otherwise. We’re not bleeding, we have good color in our faces, and we are not coughing or blowing our noses. When we look good, people automatically assume that we are good. I’m in a wheelchair, but I still look good and completely normal. If I would use a store’s scooter instead of my own, I would get dirty looks. I’m misunderstood.
But very often we are not good because so many of the symptoms are invisible. Pain, tingling, numbness, fatigue, dizziness, tightness, depression, blurry vision, balance, coordination—the list is endless. These symptoms interfere with everything we think, say or do. They are annoying; they hurt; they are frustrating; and they make us crabby. For persons with MS that do or do not show visible impairment or walking aids, these symptoms are very disabling.
Invisible symptoms are difficult to describe, and when we tell someone about them it’s hard for them to understand or empathize. Sometimes we use examples like “When I walk, it feels like I have a ten-pound weight on my ankle”, “It’s like when your arm falls asleep but never wakes up” or “My hands look normal, but I can’t button buttons.”
When we see these same people again, they forget that we have these symptoms because they are invisible. If we talk about them, we sound like complainers. Unless we complain about these things often, who would know we have these problems or that they continue to plague us? And who wants a complainer around all of the time?
Fatigue is the hallmark symptom of MS. It is a universal complaint by over 90% of MS victims. It doesn’t matter if the case is mild or advanced. It doesn’t matter if one had a good night sleep or if the MS is not currently active. Fatigue is always present with MS, 24/7. Why? Fatigue exists because MS is a disease, a chronic illness, that causes other symptoms such is walking problems to intensify. Constant fatigue leads to our moodiness or depression. So when somebody suggests we need to get out and take our mind of things, they truly don’t understand why a couch or bed is more desirable to us.
Many times people without MS are uncomfortable around us because they don’t know what to say or do. Or because of our moods or a previous bad experience, they are unsure what kind of a response they will receive. Others just can’t deal with it perhaps because of personal feelings like guilt. Therefore it is often easier for them to just ignore it.
Now this can create a catch-22 situation. MSers don’t want to complain about it; and non-MSers forget/ ignore the MS or say something that clearly indicates their misunderstanding of it. Here’s an example of a personal experience:
I’ve lived with MS over thirty years, and my 80-year old mother will still tell me about all of her senior buddies who get out there and bowl and do all sorts of things despite them being in a cast or using a cane. Or, how she has to get up every night now to pee because “that’s what happens when you get to be my age.”
Well, mom (I think to myself), I have been getting up every night to pee for the last twenty-five years. In fact, I have had the problems of an 80-year for the last three decades of my life and I am only 57. Did you lose your ability to have an orgasm at the age of thirty? And, at least that guy in the leg cast will get it off in a month. With regard to bowling, I haven’t been able to bowl since I was thirty and not only because I was using a cane. With my fatigue, balance, and coordination problems, I would have fallen on my butt every time I threw the dang ball.
Then there are the countless misconceptions because of lack of understanding. “If you had your leg removed and got a prosthesis maybe you would walk again.” “Did you ever look into surgery on your spinal column?” Uh, hello…we’re talking the entire central nervous system here! I actually responded once that “a new brain and spinal cord transplant may help but they haven’t figured out how to do that yet.”
Finally, many of us with MS feel that the news media never give enough attention to MS like they do with cancers, heart, arthritis, etc. Or if they do, it is usually done with snippets that really create more misunderstanding than understanding of it. I bet if they understood MS better they would find plenty of interesting stuff to write or talk about. Or if they talk to any of the half million people and their families in the US that have MS, a really good TV drama series could be launched.
So, what can we do about it?
We need to be educators, communicators and advocates to everybody, everywhere—beginning with the basic question and a simplified, clear answer. Forget the boring textbook medical details. Something like this:
What is MS?
Multiple Sclerosis is an autoimmune, inflammatory disease of the central nervous system, which includes the brain, spinal cord and optic nerves. That means that potentially anything controlled by the CNS can be affected–such as motor function, sensory function, sight, or cognitive/emotional functions.
It is not fatal, contagious, or congenital. There is no cure; the cause is unknown. It is generally progressive. That means that because there is no cure, the majority of persons afflicted (2.5+ million worldwide) will become disabled during the decades of their lifetime with no way to fix the damage. Current estimates are that 20-25% will end up in a wheelchair.
From the day those of us received our diagnosis, we have no idea what course our disease will take. What will be affected, in what way or how rapidly will we be affected, and how disabled will we become? MS is unpredictable and uncontrollable; the losses never stop, the grieving process never ends.
There are new drugs that are trying to slow the progression, and meds to help with relieving symptoms and shortening relapses. But they all have side effects. Nothing is available yet to prevent MS or restore most function lost resulting from its damaging effects. However, there are many things one can do to manage it effectively.
Peer-to-peer, we understand it, share our stories and how we cope with MS. We count on our peers, close family/friends and MS organizations for knowledge and support to help us manage it during our lifetime.
But we would like more. We want everyone to know and understand what MS is all about, not just be aware of MS being something that people walk for or bike for. The more people that UNDERSTAND multiple sclerosis, the less we with MS feel we’ll be misunderstood, ignored and forgotten.
Let’s all get started now: hand, send or post this article to everyone you know. Do it today!