The Invisibility of a Disease
When people talk about Multiple Sclerosis, they often talk about the difficulties of getting people to believe them or understand them when it comes to describing a certain symptom. Is this due to a lack of vocabulary or the fact that people can’t really understand something they have never experienced? I would say both; people will always try to compare anything you tell them to their own experiences, which is only natural. They may not be doing it on purpose because that’s just how our brains work. They key is for them to be able to say, “I can try to understand, but I don’t fully because I have never gone through it myself, but I will take your word for it”. The thing is, most people can’t do this; true empathy is not all that easy, even for myself; I have trouble doing this from time to time.
Everything is relative
I often talk about how everything is relative: pain, emotional difficulties, fatigue, stress, etc. What’s a “10” on your pain scale may only be an “8” on mine or vice versa. We have no way to really, truly, compare. Due to this realization, I try not to judge people when they say, “I stubbed my toe and am in the worst pain ever” because even though I know I have been through much worse, to them? Maybe that really is the worst pain they have ever experienced. You’re stressed out over a dental bill? I am certain I have more bills and debt than you, but there is also someone way worse off than me! So, I try to always keep that in mind.
Appreciating what I do have
No matter how bad you may feel in your life, there is always someone out there who would actually kill to have what you have. Because of this, I try really hard to always appreciate what I do have rather than focusing on what I don’t.
"You look fine"
OK, I am getting a bit off track from my point here: the invisibility of a disease. Now, this does not just apply to MS but many other things such as Rheumatoid Arthritis, Fibromyalgia, Depression, Arnold Chiari Malformation, Spinal Injuries, Dandy-Walker Syndrome, and the list goes on and on. Many people may LOOK “normal,” but you have no idea what is going on inside their bodies, inside their heads. Things like pain, fatigue, and cognitive dysfunction are often referred to as “invisible symptoms” in MS because if you were to break a leg, people can see that. If you have a limp or issues breathing? People can SEE that, and people believe what they see. When you’re experiencing some sort of “invisible symptom,” people can’t see it and often have a hard time believing in it. “Oh, you look fine, stop complaining”. Sadly, this happens most commonly among family and friends.
My experience with myoclonus
In my case, I can give you two examples: myoclonus and pain. I always look fine, but no one can see my insides jump around when a large box is dropped on the floor or a child screams. It makes me want to collapse and break down into tears of frustration. The sound of glass dishes clanking together still gets me; sometimes, it makes me wish I were deaf! Of course, I would never want to lose my ability to hear, but other than running away or constantly wearing earplugs, I am not sure what to do but endure.
Hiding my pain
Pain? I have learned to hide it really well. You will never know I am in pain unless I want you to know, or it’s so bad that I can no longer hide it. At work, I may be in so much pain that I want to go home right when my shift is over, but if someone asks me if I can take care of something before I leave? I am going to say yes because I don’t want people to think I am just making up excuses to get out of there because they can’t see if I am really in pain or just making it up. I don’t want anyone to ever think I am using my MS as an excuse.
The challenge of explaining MS symptoms
I wish there was a way to explain to people what certain symptoms are like besides building a great vocabulary and translating our feelings into something the average individual can understand. Most people (for example) describe fatigue as carrying an extra 100 pounds on their back all day. What I often say is that it feels like you have a really bad case of the flu and your body just wants to turn off. I try to find ways of allowing people to relate based on their personal experiences, but even still, they don’t always really get it as they have never experienced it themselves.
A day in my shoes
I would never wish any of this on anyone else, but sometimes, I do wish that someone could experience a day in my shoes, even an hour, just so they could understand.
All I can say to the loved ones of those suffering through any number of disease or injuries that cause invisible symptoms is that you may not really understand it, but you have to take their word for it, try to really understand what they are trying to tell you, no matter how crazy it may sound to you, or else it will cause much resentment in your relationship with that person. I have seen (and personally experienced) many friendships/relationships end because of a lack of understanding (or willing to try to understand). This is a huge issue and one that is unbelievably frustrating, even to myself because despite my decent vocabulary I can never seem to really translate how I feel into words. But seeing someone really try to understand? That makes me feel good.
We can’t just “push through” a lot of this stuff as many might say we should.
Who do you have trouble explaining symptoms to? Family? Friends? Work? Share below!
How well do people around you understand MS?