A lot of people have covered this topic and I have long wanted to voice my take on it because it comes up over and over but I was never sure how to really word what I wanted to express in fear that I might say something that someone could take offense to so before you even start reading I want you to know that I am not placing blame on anyone, I am just talking about how I sometimes feel and why I think I feel that way.
“Well, you look good”
How many times have you heard that? You tell someone how you feel horrible and their reply is, “well, you look good”. I hate when people tell me that! I understand that sometimes people just don’t know what to say when I describe a symptom to them, it would be like an alien from outer space telling me about a color that is not even on the spectrum of what human beings can see. What would I even say? Simple, I would say, “well, it looks pretty”. That is me pretending to understand something I really don’t. Most people just can’t/don’t understand the feelings we are describing to them and as annoying/frustrating as that is I have to take a deep breath and try to think of a better way to communicate to them what I am experiencing. Now I would be lying if I told you that I do this every single time this happens with someone, that would be more than exhausting. Most the time I just respond with a bit of sarcasm, I say something like, “too bad I don’t feel as good as I look because then I would feel amazing!”
Now I can’t stress this enough, I know that most people, in general, do not/can not understand how Multiple Sclerosis (MS) affects me, as in, me personally, emotionally and mentally. I mean most people do not live with a chronic disease that can affect every part of their body right? So what mostly annoys me is the lack of empathy; the lack of an actual desire to TRY to understand what I am going through. Most people have been sick with something like the flu, which is typically not seen as “enjoyable”. So when I do decide that I am actually going to attempt to help someone try to understand how I feel I tell them to think of a time that they were really sick (with something like the flu) and how it made them feel. Not only how it made their body feel but how it made their mind feel; how they just wanted to rest and be left alone. I know that most people with MS would agree that the flu pales in comparison to MS but remember, I am just trying to help them compare one of their own experiences with mine to try to better understand how I feel.
I Understand that I Don’t Understand
It’s one thing when people who do not have MS don’t understand how I feel but it’s another thing when people who actually do have MS say the same things. It is really difficult for me to not get angry because all I can think is, “of all people YOU should understand”. I am not saying that I think they should understand exactly how I feel, that would be ridiculous, there are just too many different factors in both this disease and people’s lives in general that can create different feelings or affect how we respond to them. What I am saying is part of me feels like most people living with MS should be able to understand the idea that “they don’t understand how I feel” because they themselves probably understand what it feels like to not be understood. They themselves probably know how MS can cause you to experience many things that are just too difficult to explain, too difficult for people to understand. But I suppose that in order to understand that you cannot understand something actually requires you to be pretty understanding.
Yes Doc, I Look Better but I am Not Better
So when it comes to people with MS not understanding how I feel I may want to be angry at first but then I remind myself that empathy is more of a skill that has to be developed over time than it is a simple emotion like “joy”, “anger” or “sorrow” so again I blame myself for not having described what I am experiencing adequately. It is no one else’s fault but mine (at least that is how I personally see it). I can’t say I feel the same about certain doctors (like neurologists), specifically those who label themselves as an “MS Specialist”. On one hand, I understand that their specialty is in understanding the disease, as in, how it works and how to best treat it. I understand that technically their specialty is not in understanding how this disease affects people mentally or emotionally, that’s someone else’s job. But on the other hand? I feel like if you do not understand every aspect of a disease (how it affects more than just the physical body) how can you really claim to be a “specialist” who knows how to best treat the person who has it?
The bottom line is over time, after treating so many people with MS, a doctor should have developed the skill to be empathetic and understand that they may not understand how someone FEELS (even if they can’t/won’t admit it). If, as a doctor, you tell me that I “look good” when I am telling you that, “I feel terrible” then how are you to understand that how you are treating me is not the best option? Yes, I can walk down the hall and back without falling on my face but that does not necessarily mean that my vertigo (for example) is getting better, it just means that I have learned to better adapt to it because though I may just want to stay in bed all day I can’t because life is still going on at its own pace so I have no other option than to try to adapt. If you can’t understand that then you can’t provide me with adequate advice on how to treat this symptom because in your eyes, the symptom that I am telling you is unbearable to live with? Is not even an issue anymore! But a lot of the symptoms MS can cause are invisible so if you simply believe in what you see? Then yeah, nothing is wrong because “I look good.”