The Semi Denial Is Strong
I am living with denial. I am somewhat in denial about having multiple sclerosis. I call it “semi denial” because I am not walking around thinking that I do not have MS. I have seen the MRIs and I experience the symptoms. I am an advocate and writer because I want to share with the MS community and perhaps encourage others to thrive with this chronic illness. The denial part comes in when I shake my head and think, “Really? Seriously? Well, I'll be damned. I have multiple sclerosis. Go figure.” It is not a denial of the facts, it is more of a continuing surprise.
It's okay that it's me
When I tell people I have multiple sclerosis I invariably get the Jerry's Kids telethon look with an “I'm sorry”. I brush it off because I do not want the pity. I am not pitiful. I just have MS. I usually respond with this: “Somebody has to have MS or they would have all of those walks and runs for no reason!” This response elicits a laugh and breaks the ice in regards to my illness.
I have never once asked why I was the person who had to have MS. I always figured that I was not immune (no pun intended) to have a disease or chronic illness. To do so would put me on a sort of high horse where I believed I was above getting sick. I just took it in stride and tried to keep it moving. My shrugging it off is a part of that semi-denial. I have a chronic illness that has an unknown future and the ability to affect every part of my body. I know that every day is not the same. Even hour-by-hour I am at the whim of MS. Am I jumping for joy? NO! No, I am not happy that I have MS. No, I am not fine about having MS. I am resigned to having it, but resignation is not the same as acceptance.
What is acceptance anyway?
When I write about accepting my diagnosis, I think of it as a peace of mind that has settled into my bones. It means not startling myself some days with the fact that I am living with multiple sclerosis. Other people seem to be accepting of their diagnosis while doing their best to take care of themselves. I do not confuse acceptance with happiness. No one is happy to have multiple sclerosis. To me, it would feel like having MS as a best friend. When I was initially diagnosed a counselor described it as having someone along with you on your life's journey. I imagined that as metaphorically looking over to the side and nodding at your companion. Almost like a western film where the sheriff looks over at their trusted deputy. They share a quiet moment of recognition and respect. Maybe a little nod to one another. My MS is not like this. It is more like a thriller or horror movie where you look up and your heart drops...hard! Where did you come from MS?
Denial is not unusual with MS
It is not unusual for people living with MS to be in a state of denial. The stresses that come along with this disease and relapses make it easy to just ignore what is going on with our bodies as part of denial or other coping mechanisms.1 One of the benefits of that river in Egypt (the river De Nile joke) is that it keeps me from dwelling too much on the pain I experience and other downsides. It also means that I am slow to recognize when multiple sclerosis has reared its ugly head.
It is theorized that a form of healthy denial can be a good thing when properly watched and could be called resilience instead.2 That healthy denial means that one can know that they have an illness but chose to focus their emotional energies elsewhere. Long-term denial is bad as it can interfere with treatment but short-term and in the right doses, it can be helpful. My semi-denial works for me right now and maybe one day I will look over and not jump from surprise, but instead tip my hat to the deputy by my side.
Were you misdiagnosed with something else before receiving a MS diagnosis?