My Guilty Conscience Weighs Me Down
“Don’t compare yourself to others. We are all unique.” This phrase is true. Multiple sclerosis by its nature affects each of us differently. We cannot even be sure of how we feel day to day or hour to hour. I know this. I repeat that phrase to others as a reminder to be kind to oneself.
But I still compare myself to others with MS
I am a hypocrite. I compare myself to other MSers and the guilt weighs heavily. It is external and internal reinforcement of the idea that I am not sick enough. The image that the general public has is wrong. We know that there is a diversity of impairment within the multiple sclerosis community. The public has primarily come to see people living with multiple sclerosis as people in wheelchairs. More than once, I’ve seen MS portrayed as a death sentence. It has been partially responsible for my internalized shame.
The effects of MS vary from person to person
Only one person in the multiple sclerosis community has questioned my illness or level of disability. In general, we are educated very quickly about the ignorance of assumptions. The effects of multiple sclerosis go across the spectrum and then back. Some of us run marathons and climb 14ers. Some of us rely on assistive devices. We embrace our similarities as much as our differences. Unfortunately, this community was not my first experience. Instead, my first four months planted a seed that grew. A pernicious and unrelenting feeling of guilt that blossomed.
Attending a support group that was anything but supportive
She was bitter and angry. At every monthly dinner, she railed in raged against multiple sclerosis. I had a great deal of sympathy for her. She was living in a body that was betraying her. She needed help with the ins and outs of daily life. She catalogued everything and shared it with us. We knew about her sliding down the shower wall. We heard about every foot drag and indignity brought about by this cruel disease. She would tell us that we could not understand because we were healthy compared to her. I stopped going at the fourth dinner where she again complained, “This wasn’t supposed to happen to me! They told me that I was a young, white woman so I should have relapsing-remitting, not primary progressive.” Even though I was stung and insulted by her comments, it was too late. I had already been told by someone in my community that I did not deserve to be less impaired.
Proving to myself that I had the ability to say, "I have MS"
Over and over again I would remind myself that there is no one way to have MS. I would mentally catalog my various symptoms. I would count the number of medications that I have to take. I even counted the exact number of pills that I had to take daily. All of this was my attempt to feel better. I had to prove to myself that I earned the right to call myself a person living with multiple sclerosis.
Feeling pain and resentment
The diagnosis itself was not enough. I wasn’t supposed to have relapsing-remitting MS. In my head, I would hear her words along the lines of I was 'taking her place.' I would feel uncomfortable and out of place at times. My odd symptoms seemed like nothing compared to everyone else. I never compared myself to those people who were not substantially impacted by MS. I never judged them or resented their better health. I did not do to them what was done to me. The pain that it would inflict is not something I would wish on anyone.
Being nicer to myself
I do harbor resentment, though. I resent the media that shoehorn people living with multiple sclerosis into one template. I resent a sad and hurting young woman who foisted her trauma on me. I resent myself for not fully purging undeserved guiltTrap and Release the Guilt of MS and shame. There is no room for these emotions in this struggle and that is my challenge. I need to shed guilt, shame, and resentment. That particular train leads to nowhere. Every day it gets easier and I’m nicer to myself. It’s okay that my MS is what it is. And I don’t need to prove that to anybody.
Were you misdiagnosed with something else before receiving a MS diagnosis?