MS - Understanding the Lack of Understanding

If I could have a second chance to sit and work alongside her for just eight hours, things would be so different. I did not understand her. I went back and forth between compassion and total lack thereof. She was always tired and would literally lay her head on the desk and nap, while the rest of us carried her load. She had Multiple Sclerosis, and sixteen years ago I wasn't really sure what that was.

The compassion I had for her went beyond her MS because she also struggled with infertility and desperately wanted children. I had been going through secondary infertility for eight years myself, and knew firsthand just how emotionally draining that could be. She didn't understand my pain because I had a child. My lack of compassion towards her was rooted in my ignorance about the disease she was living with. She looked perfectly healthy.

I became pregnant and miscarried during the brief time we worked together. She was kind. When I became pregnant with my twin boys, she quit her job due to medical issues. She told me as she was leaving that she was happy for me but it was painful for her to be around me. I understood. She thanked me for always being nice to her and I felt immediate guilt. I knew that while I was not mean to her directly, my actions and my words when she was not present were not always nice.

When I was diagnosed with Multiple Sclerosis, I immediately thought of her. Looking back, I now realize that I had been having symptoms of MS long before I met her. She finally made sense to me. I realized she must have suffered from fatigue and was also likely dealing with the side effects of her medications. She was probably trying to keep working out of necessity, and that I can certainly relate to. In retrospect, I wish I would have been kind enough to take the time to educate myself on the disease my coworker was dealing with. Perhaps, I just wasn't ready for the knowledge of the future that lay ahead of me.

Today, I can say that the most beneficial part of our encounter is that I have a complete grasp of people’s lack of understanding. It's easy to see why someone can look at me and not understand that I am sick. While I know now there is huge difference between being tired and suffering from fatigue, I realize everyone does not. When I say I am tired and someone replies back that they are as well, I don't become defensive. Life is busy for everyone and people are just plain tired. MS is a disease that many can have and still look the picture of health on the outside, while a civil war of sorts rages inside as your own body is attacking itself. People often lack compassion because they lack understanding. Our biggest obstacle is not letting them cause us to become bitter. We have to enjoy the good days to the fullest, and on the bad days, just do what we have to do to take care of ourselves. On those bad days, we shouldn't dwell on the negative; depression is a beast in and of itself. We don't need to cut people off because they don't understand - unless those people are toxic. Sometimes we feel we are alone on an island, but all too often, we get ourselves there by choosing to get into the boat.

Karen

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