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Survivor’s Guilt and MS Awareness

Posted on October 14, 2016

By Kathy of FUMS

According to Wikipedia, “Survivor guilt (or survivor’s guilt; also called survivor syndrome or survivor’s syndrome) is a mental condition that occurs when a person perceives themselves to have done wrong by surviving a traumatic event when others did not. It may be found among survivors of combat, natural disasters, epidemics, among the friends and family of those who have committed suicide, and in non-mortal situations such as among those whose colleagues are laid off. The experience and manifestation of survivor’s guilt will depend on an individual’s psychological profile.”

I was familiar with the term which, I’m sure, is why it came to mind the last time I went to see my neurologist. They had redone the space and separated out the MS population into one office. I walked in and immediately felt my stomach take a dive. I checked in and sat down. Looking around, there were three wheelchair-bound patients, several folks with walkers, and a few with canes. I was the only one chugging on my own steam. The door to the back office opened, and the foot of a gurney started to wheel out. That patient couldn’t speak or focus and had a lot of tubes coming out of various places on her body. A healthcare worker was by her side, thanking the nurses and making an appointment for the next month, while the ambulance transport team readied the patient on the gurney.

I had seen all of this on past visits, but it was in a general neurology population office – not specific to MS. I was still able to tell myself that those people who were the worst off must have ALS or something – certainly not MS. When I could hold it at arm’s length and assume that the patient population that I belonged in was not indicative of what I was seeing – things were fine. Not anymore. There is no denying walking into an MS-only practice and seeing a vast array of disability that this is a very real possibility in my future.

I had done such a great job of denying – and assuming – that I honestly had never considered myself at risk for that level of disability. Healthy denial? Maybe. Arrogance? Potentially. Whatever the motivation, now that I was confronted with this truth, how would I handle it? With survivor’s guilt. I actually felt guilty because I could walk unassisted. I have, thus far, escaped the very worst ravages of this disease, and on some level, I feel guilty about that. Not guilty like “I deserve it” but guilty like “why don’t I deserve it?” That sounds so silly now reading it back, but the truth is, I hear from people who are truly suffering with the disease every single day. I am not. And while I’m ever so thankful for that, the question of “why am I so lucky?” and will my luck hold out?” are now at the forefront of my mind.

One of the great mysteries of MS is how it chooses its victims, and the course of their disease, without prejudice. It is an equal opportunity offender. So the question of why I am so fortunate is one that simply cannot be answered. Nor can the question of future disability. It strikes me that while this is so “in my face” – it’s really not unlike life without MS. Everyone has the chance of developing some disease – and the extent of it is usually indeterminable without the benefit of time. MS is just life magnified.

And while, in all of humanity, there are those who are better off and those who are worse off, no one should feel badly for falling somewhere in the middle of that demographic. I wouldn’t wish someone without MS would have MS. I’m sure those people at the neurologist’s office that day didn’t wish that I had the same issues that they did. So why put that on myself? After all – saying I have survivor’s guilt without seeing how this whole thing turns out is a bit short-sighted – or even arrogant. Who knows if my MS will progress beyond anything I saw at that office that day?

The bottom line is this: A little denial is one thing; burying your head is another entirely. I can have a healthy dose of denial while still sharing my story and the story of others with MS. I can convince myself that my MS will never progress beyond my current situation – and I can work to help those whose MS has progressed. In other words, we can all help spread awareness, and, maybe by doing so, escape the pain of survivor’s guilt.

And remember, sometimes it helps the stress, just to say “F-U-M-S”!!

***

Kathy is the blogger at fumsnow.com. She tells her story, poking fun at MS, and she recently launched a new podcast. She is also the writer and singer of this song about multiple sclerosis.

Posted on October 14, 2016
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