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Do you ever feel “survivor’s guilt” about being a slow progressor?
Living past the predicted 3-5 year prognosis for ALS can sometimes give us a case of survivor’s guilt. Especially when comparing our slower symptom progression to other pALS who were diagnosed around the same time as we were.
Do you feel guilt or embarrassment comparing yourself to others? What do you tell yourself to snap out of this feeling?
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6 Replies
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I do. I’ve had acquaintances with ALS who’ve passed on from quickly progressing symptoms. Whenever I interact with their surviving family members, I feel guilty I’m still alive and their loved one isn’t.
I try to support the ALS community through my blog and Living Well columns. Hopefully, I can motivate others to take advantage of the latest research showing symptoms are slower from proper medication, good nutrition, good sleep, gentle exercise, and an optimistic mindset.
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I do not feel survivor’s guilt top often. After 11+ years I have known people all across the age range and length of time living since Dx. I felt more survivor’s guilt when I know pALS and cALS die without reaching various “events” or desires. I have 10 grandkids. I know some who have died never having a relationship with someone else. Some don’t see their kids get married, graduate, become a teenager (yikes), go to Kindergarten, etc.
There have been times when I feel some guilt in all the life experiences I have done through other peoples efforts. Those things truly are gifts. But I realize that I am out there doing one or two things with various ALS organizations They were given or donated because of shared interests, thanks, publicity (a logo or talk at an event).
None of us know when we are going to die. We don’t even know if it will be from ALS. My heart hurts when I see someone I know pass before the see their kid attain or reach something. That goes away quickly when the family and friends thank me for whatever they say helped. My desire through all of this is to show that Iif I can do it, then it might encourage someone else to try something they might never have tried before.
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No
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I wouldn’t say guilt exactly. I feel great compassion for anyone with ALS but particularly those who are diagnosed at a younger age and/or are progressing more quickly. I usually don’t share too much about myself and wonder if some question my diagnosis because of my slow progression. Jane
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Yes, I agree with you Jane – – I especially feel empathy for those diagnosed at a younger age.
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No..I feel very blessed to live 11 years with ALS. If I read of some one only lasting 3 years; I feel even more blessed bc there is a reason I am still here. Just isn’t my time yet.
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