One definition of guilt is feeling responsible or regretful for a perceived offense that is real or imaginary. Guilt can also be a stage of the grieving process. Oftentimes, those of us who have a loved one with cystic fibrosis have experienced all the stages of the grieving process. But to me, guilt is the step of the process that stands out the most.
One form of guilt that we don’t often think about is the guilt that comes along with having a healthy child even though your child has medical complexities. It’s guilt that hits when thinking of the medical community and when talking to family and friends. This guilt can be fleeting, but also all-consuming. It’s a strange and puzzling feeling. It honestly took me a while to identify it.
When my son, Brooks, was first diagnosed with cystic fibrosis, I never imagined that I would feel guilty. Neither I nor my husband knew that we were CF carriers. Now, when I hear stories of other CF patients or talk to parents in support groups, I get this overwhelming feeling of guilt when I consider how healthy Brooks is. I wonder how and why we got so lucky when others didn’t. Maybe I’ll seem like an imposter to the CF community. It almost doesn’t seem fair. It tends to make me feel as if we may not fully belong and that others think we don’t fully understand the hardest parts that come along with this diagnosis. It almost makes me feel like I can’t validate my own feelings of fear that come along with this disease.
It will forever feel hard to expect sympathy or ask for prayers as long as Brooks continues to be healthy, knowing how severe other cases of CF are.
I have also often felt guilt when friends and family ask how Brooks is doing. When I say he’s doing great, it’s as if they’re waiting to hear “but …” or some sort of bad news. I almost feel like a fraud when we’ve told people how severe his diagnosis is and could become because CF is a progressive disease. I feel like others think I have blown the diagnosis out of proportion to begin with and that the extra medical attention and precautionary measures are just for attention. For example, our church had added Brooks to the prayer list so that the congregation as a whole could keep him in their thoughts and prayers. Routinely, members of the church come to my husband and I with a look of pity, asking the million-dollar question, “How is Brooks doing?”
I know these people mean well. They care about him and want to help anyway they can, but the amount of guilt I feel when answering — and the questioning looks I get — hits me like a ton of bricks. Sometimes I wonder if people think that he really isn't that sick, but deep down I know the truth that it could be just a matter of time before the tables turn. That’s when my guilt turns into something more and leaves me desperate.
This guilt isn’t a guilt like I’ve experienced before. I mean, who feels guilty for having a healthy child?! I’ll tell you who — parents who have been served bad news on a silver platter and know there are others out there that have it so much worse. From the outside looking in, it would be easy to say, “Don’t feel bad for having a healthy child with this diagnosis! It’s wonderful! Don’t dwell on it!” But without living it, it’s hard for others to understand. Honestly, for most people it’s downright confusing. Up until I was able to classify this feeling as guilt, I found it confusing too.
Believe it or not, I am thankful for the guilt. Wow, that’s something I never thought I’d say! This version of guilt has taught me so much: how to be more thankful; how to live life to the fullest while we can; how to be more empathetic toward others who don’t get to experience this form of guilt; and how to navigate conversations with others about Brooks and the CF community.
I yearn for others in this community to feel the guilt I feel knowing that means the people with medical complexities in their lives are also finding themselves on the healthier side of diagnosis. Guilt doesn’t have to be a negative thing. Guilt can truly be an undeniably welcome feeling.
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