One of the things I keep coming across lately is how upset some multiple sclerosis (MS) patients are with people that tell them that their symptoms “happen to everyone.” To be clear, I personally ignore such comments. But the frustration of those patients with the lack of understanding from their audience about their condition is understandable. Perhaps because the statement gives rise to expectations that MS patients can and should perform just like everybody else. Or at least in the way expected from everybody else.
This blog has already referenced how MS is a ‘fingerprint’ disease – different for each patient, both in severity and progression of symptoms. One patient may not exhibit significant symptoms for years, another may be put in a wheelchair by their first episode (rare, but it happens).
Truth is no (physical) condition is identical for two people, not even something as simple as headaches – for one person they might manifest as an annoying buzzing, for another it could be a debilitating condition accompanied by pain. And the same course of treatment may possibly not work for both those people, why else would we seek to find individualised treatments based on genetics. I myself have already gone through three modes of treatment – well, four if you count the macrobiotic phase – and I will hopefully soon start a fourth that still may or may not work.
This is no big surprise. Remember how the more than seven billion people on the planet are like snowflakes, no two are identical? The same applies for any subgroup of the human race, in this case MS patients.
Trying to explain how things are different for MS patients than for “everybody else” and why people should not analyse the situation in that manner is one way to go. However, this would do no good for our purposes. Instead, we need to see how it is that they come to that conclusion. Perhaps then we can correct what is at best a misperception.
One reason, prevalent especially among family members, is denial. Denial of the disease, denial of the symptoms, the belief that if they deny that the condition exists it will magically go away. Even the belief that if they push the patient enough they will accomplish the things they say they cannot do (since it is all in their head). But that it a more psychological reason, and there is not much one can do about it. How do you tell a loved one that they have no idea what goes on in your body, and that they should seek help in accepting the situation? I am not being negative about what I can achieve, but a realist; there is a lot that MS patients can achieve, sometimes more than they think they can. But pressuring them to perform as if nothing is wrong is not the way to go.
The main reason however that the reaction of people is that “it happens to everyone” is probably the difficulty MS patients have in explaining their condition to everyone else. To non-medical personnel that is. Or perhaps a difficulty in understanding by most people (sometimes even MS patients). Which at first makes no sense – after all, our doctors know what we are talking about. But one has to consider that those are trained medical personnel that have seen and heard about MS before, have heard the same or similar symptom descriptions myriads of times before. That have studied the underlying causes for those symptoms, and have learned to interpret what is told to them. But how can you explain fatigue, heat sensitivity, blurred vision (and many other limiting, not restrictive, symptoms) to people, when it does in fact happen to everyone?
And that leads to the realisation by MS patients that others do not understand what they are trying to describe. And that causes further frustration in them. Perhaps even doubt that they even have (or retain) the capacity to explain things to others. But there are ways around it.
The simplest way to solve the problem, actually both of the above problems, is to simply ignore those people. I know I do it often. Do all you can do, and if they do not like it, oh well.
Another way is to tell people that just like it happens to everyone, an MS patient is much more sensitive to the causes of the symptoms, which are more intense. I tell people that the symptoms are 20-30 times more intense in MS patients. I know I can not actually quantify the symptoms, but the principle in play is emphasize how intense they are. And it seems to work.
But there is a more effective, albeit difficult option.
If patients (and their friends) increase awareness of what the disease is, how it behaves and reacts to environmental conditions, the reaction of people will no longer be dismissive. Perhaps not for everyone, you might still have to ignore some people’s reactions, but for some people this may help. MS Awareness Month is almost over (it was in March in the US), and World MS Day 2018 is coming up on 30 May. But remember, raising awareness is not dedicated to one day or month a year, it is a continuous effort. So, go out there, be open, make a difference.
Cover photo by twenty20.com
Text photo by unsplash.com