What’s Going On Behind the Scenes

Over the years I have grown all too familiar with the awkward silence between me and someone else that is caused by uncertainty. The uncertainty of two people who have not talked in a long time. It could be a friend or even a family member; we will cross paths for the first time in a while, and it seems as though they are avoiding eye contact with me. There is a weird tension between us as if we had recently gotten into an argument, but the thing is, we hadn’t. Eventually, one of us will say something but not without that hint of uncertainty that’s communicated only by short eye contact. No one actually says it but the question, “Are we cool?” is in the air. At this point, I can’t help but feel bad because I understand what caused this. It was me. I had slowly disappeared because my life with multiple sclerosis (MS) had become too much of a distraction for me to uphold my part of the social contract between the people in my life and me.

It’s a two-way street

I know this is very common among people living with MS because I have talked to so many dealing with the same thing. Some people “disappear” from our lives because they just can’t (or don’t want to) deal with all our MS drama, but those aren’t the people I’m talking about right now. You see, I understand that every relationship is a two-way street and that I am nowhere near perfect, so some of the people that have stepped away from my life did so because of me. Because of something I could have handled better or reacted to differently. Because I seemed to have fallen off the radar and stopped interacting with people. How does it go? “Life is 10% what happens to you and 90% how you react to it.”

So overwhelmed I can’t think

Living with MS can get pretty stressful – the symptoms, the pain, the financial struggle, the emotional roller-coaster, all the unknowns, etc. – and so, it’s really difficult not to become overwhelmed. We all react differently to these feelings but I would say that a lot of us sort of treat this situation like the rising temperature of something hot on our skin, the rising volume of some ungodly noise, or the increasing intensity of a bright light that’s fueling a migraine. We naturally just want to jump back and get away from it. At least that’s how I feel sometimes… I just get so overwhelmed that I can’t even think, I can’t function, I can’t bear it for 1 more second! All I can think about is making it stop. Making it all go away… or because a lot of this stuff is out of my control, me getting away from it.

Behind the scenes

But to the people around me, that’s not really visible. The world can’t see the chaos in my head… the things that I am dealing with that I don’t voluntarily just share with everyone. And that’s probably one of my faults… I hide a lot of what I’m dealing with behind a mask, and I have learned to do so very well because I don’t want to sound like I am always just complaining. Or maybe I don’t want to appear “weak”? Either way, I don’t always share what I am dealing with and so, when I have to step aside to get away from it all? Well, I can see how (to others) it might look like I am just withdrawing from the people around me as if I just don’t want to talk to or see them but that’s not the case. Think of it like this; a lot of work goes into making a movie or whatever TV show you are currently binge-watching, but you don’t see any of it. All you see is a couple of hours of the finished product. All the work that went into it is hidden behind the scenes. There is a lot of “behind the scenes” work that goes into keeping the show known as “Matt” running and you don’t see any of that either.

You see the finished product

I think that is what my problem is here. I don’t always share with people just how much I am dealing with. People ask how I’m doing and I usually just say that I’m fine, or maybe I’ll mention a symptom that’s really flaring up, but that’s just hiding the fact that there is a lot more going on on the other side of the curtain. There is almost always some kind of battle taking place in my daily life that you just can’t see and there is a good chance that’s why “I have disappeared.” I’m not ignoring you because I have some kind of problem with you, I haven’t lost interest in you, no one did anything wrong; I’m just working on something behind the scenes that you’ll probably never hear about because all I’m letting you see is the finished product.

How to better communicate

I don’t know what the solution is here… I don’t know how to be more open with people without overwhelming them and pushing them away. All I know is that there are times where I’ll see or talk to someone, and I can just feel that uncertainty in the air. The uncertainty that I caused because I seemed to have disappeared and they don’t know if it’s because of them or not. I guess the obvious answer is that there needs to be better communication so that everyone is on the same page but again, I don’t know how to be more open without overwhelming people and pushing them away…

Do you feel like this is also an issue for you? How do you deal with it? How do you walk the line between sharing too much and not sharing enough? Let me know in the comments below.

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Comments

View Comments (3)
  • sueaceuk
    1 week ago

    Yes, me too. With SPMS I feel people are checking me out and neither of us know how to deal with it. “What’s new?” “Well I’m in this wheelchair” “When will you be better?” (true story)

  • mascha
    2 weeks ago

    Sounds so familiar. Often people don’t want to hear, even if they ask they don’t really want to. I find it’s better to say nothing but by doing this i feel shut out. I don’t have a lot in common anymore with most people because I don’t like the subjects of tennis or the dreaded “ what work do you do”. It’s awkward and i try to avoid saying MS most of the time.

  • Matt Allen G author
    2 weeks ago

    It sucks but most often it’s definitely just easier to not say anything about MS because like you said, sometimes people don’t actually want to hear about, they just ask because “it’s what they are supposed to do”

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