MS, The What If’s and Survivor's Guilt

Jamie Tripp Utitus
Written by
Jamie Tripp Utitus

We have all heard the term “survivor’s guilt.” I always assumed that the people who reserved the right to use that word had to have survived some kind of horrific tragedy. But I was talking to a friend the other day about this nagging guilt I have been feeling lately, because one of my other friends is struggling with his MS. When she suggested that maybe I was experiencing “survivor’s guilt,” her suggestion stopped me in my tracks. I thought she was way off. Yet, when I Googled the word, I discovered that there is more to these phenomena than I had previously realized.

I found an article, Survivor’s Guilt, What Long Term Patients Don’t Talk About and my heart took note that it didn’t just include people who endured an acute type of experience, it included patients with chronic illnesses and even healthcare providers!

So what is survivor’s guilt? Melissa Brymer, Director of Terrorism and Disaster programs at the UCLA Neuropsychiatric Institute in Los Angeles said, “It’s important to understand what the survivor guilt means for the person, a lot of times,” she said, “It’s an expression of grief and loss.”

My sense of grief and loss stems from the fact I have seemingly started in the same place as others; same diagnosis, similar symptoms, and same age, but some of my friends have progressed far beyond my MS. I struggle, emotionally. It comes in waves, but when it hits, it hits hard. Why can’t they walk now and I can? I have friends who are at home and can’t make a living, yet I still can. Why me? Why not me?

Perhaps my friend’s observation was a gift. She gave me permission to accept the truth-an MS diagnosis is traumatic. Fortunately, we make friends in the community, and unfortunately, we watch some deteriorate at much faster speeds. It makes us feel helpless. It reminds us that we too, are vulnerable. We grieve and that is okay.

How to Deal with the Guilt

If survivor’s guilt is an expression of grief or loss, how do we express it? When you are feeling this grief, what do you do with it?

Let it Out! It’s okay to have a pity party. Play some sad songs, cry, stare out a window or lay down. Sometimes you just have to let yourself own all of these emotions, but not for too long.

Lend an Ear: Your first instinct may be that you may want to avoid that friend who is struggling because you are feeling badly about their progression, but that is actually the worst thing that you can do. Call them up; offer to help if you are able. Bring flowers, send a funny text, do something to let them know that they are in your thoughts.

Take Action: Survivor’s guilt can be used for good; because it allows us to see things and understand things in ways that others can’t. If you are a survivor and you are thriving, you have an exceptional gift to see the world with compassion and understanding that others simply don’t have. Use it, express it. Or take some action. Participate in an MS fundraiser, or do something to promote better awareness. Speak up on behalf of those who are struggling.

My final advice is to let this guilt motivate. Actor, Clint Eastwood once said, “Tomorrow is promised to no one,” so let your guilt be a reminder to live each day and take it for what it is. Chase your dreams, spend time with friends and go for it in whatever way you choose.

If you are experiencing some survivor’s guilt, I hope these suggestions will help you to positively channel that guilt into constructive living, and understand survivor’s guilt for the unexpected gift that it may be.

Do have you ever experienced survivor’s guilt? Share with us on our Facebook page.

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Jamie Tripp Utitus
Written by
Jamie Tripp Utitus
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