Dealing With Guilt
Guilt can be rough to deal with. Everyone deals with guilt on some level.
I’m sure my parents and siblings have dealt with guilt over my SMA. Anytime someone close to us deals with a tragedy or life-altering illness or disability, we tend to feel guilty about our own health and well-being. Guilt is one of those things that we usually don’t talk about.
Even though I have this disease, I have felt guilty about the level of health I have over someone else. I’m not a mental health professional but I would guess this is somewhat normal.
I truly believe all humans have compassion for each other hence the guilty feeling.
Feeling guilty when others have to help me
I’ve always tried to make everyone around me feel ok about my disability. I can’t say I’ve always been perfect at this, but I have done a pretty good job.
I’ve never wanted anyone to feel bad for me. The part where I struggle is the guilt I have over others helping me.
I find myself thinking how weird it is that we have to have other people do things for us. I’m extremely grateful for all of the support that I have received in my life.
Care from my parents throughout my life
My family, especially my parents, have provided me with years of care. I know that came with a lot of sacrifice for them.
This has caused a lot of guilt on my end. I know for the most part they would say they were happy to help.
Even though I’m a middle-aged man, I am still their child. However, when I think about those sacrifices and opportunities they missed to take care of me, the guilty feelings bubble up.
Feeling bad about full-time care
This past year my girlfriend took on the role of my full-time caregiver. We had already been dating for over 4 years, so she was used to assisting me on a part-time basis.
Providing my care on a full-time basis all by herself did give me some anxiety and guilt.
When I was living with my parents, I had two people there able to assist me. The good thing about that is they could take turns and one of them could go do something without worrying who was home to help me.
Now that it’s just my girlfriend, she doesn’t get a break. This causes me to have guilt.
The importance of communicating with caregivers and loved ones
The one thing we really excel at is communication. I know, like my parents, that Suzanne doesn’t want me to feel guilty. She reminds me that she has chosen to do this.
I would imagine that most people with SMA deal with guilt on some level. I also would think that those close to us also deal with guilt.
I want to encourage all of you to communicate your feelings. Communication is key to all healthy relationships. When I say relationships, that entails your parents, siblings, friends, romantic partners, and caregivers.
Encouraging people in those relationships to be upfront and honest with their feelings can help quell those feelings of guilt.
Are you familiar with making food texture modifications for SMA?