Series on Emotions: The Guilt a Person Carries When Their Sibling has a Disability

It was time to walk out of the door of my house and get in my car to make an hour trip to my freshman year of college. For most 18 year olds going off to college, this time can be a rollercoaster of emotions. They can experience feelings of excitement, freedom, nervousness, and of course being scared to death all at the same time. Compared to my peers, however, I experienced one emotion that outweighed all of the others, guilt. Yes, guilt. Although I was driving myself to the next chapter of my life filled with academia, freedom, parties and boys, I cried the entire way. Leaving for college is supposed to be one of the happiest and thrilling experiences of one’s life; however for me and my family it brought an unsettling transition. Those tears and whirlwind of emotions came from leaving behind my brother. The guilt was suffocating at times. I was leaving my parents alone to support him, without having me there to buffer. I realized in that moment everything would change not for me, but for him.

I share this story because growing up with Nick, guilt would peak in from time to time.

I felt guilty that things came easy to me.

I felt guilty having a lot of friends and going to do things with them, as Nick stayed home.

I felt guilty I was smarter than him.

I felt guilty that I had better health than him.

I felt guilty that I got my driver’s license.

I felt guilty that I had opportunities that he didn’t.

I felt guilty that I was me and he was he.

I can’t even begin to tell you how many times I asked the question: “Why didn’t I have the disability”?

I remember trying not to celebrate my successes, because he didn’t have the same.  I remember dragging him to my softball games, when he didn’t have the same type of social platform and sports (although let’s be real he loved my softball games because his real sport was the concession stand, but trying to make a point with my guilt).

Of course the guilt was stronger as a child, but now as an adult that guilt has grown into something different. I got married, I had kids, and have a wonderful career.  What role does my brother play in all of that? The guilt I feel now is that I moved on and he didn’t. I feel guilty that my brother will not experience a similar life in adulthood.  He will not get married, have kids or a career.

No matter how strong this guilt was or is, and the other feelings I will share in future blogs, one thing will always remain the same….I wouldn’t change it for the world. These feelings made me someone. These feelings made me look at life with a different viewpoint. These feelings made me grateful for the simplest blessings. I became empowered by these feelings and learned to work through them to define me into the person I am proud of today.

My Imprint:

Parent takeaway: understand that your “typical” developing child doesn’t really know it’s guilt they are feeling. It may come out more as frustration, sadness, or outbursts. Be open with your child on the emotions you personally cycle through about having a child with a disability.  Let them know it is okay to feel guilt. Don’t discredit their feelings, just help them process through it by acknowledgement and understanding. Reassure them it’s okay to be who they are and okay to feel the emotions.

Teacher takeaway: just being aware of the cycle of emotions a student in your class might be going through if they have a sibling with a disability. Open that line of communication by listening because they might not want to share these feelings with their parents.  Your student may feel their parents are already dealing with a lot and don’t want to burden them. You don’t have to know what to say, just listen.

Community member: again just being aware, and maybe to understand a little of the emotions they might be going through so you can offer a listening ear. Never try to discredit their feelings or make them relatable, just listen and offer support.

Continue to check back to follow the Emotion Series. There will be 4 more blogs which highlight the emotions a sibling experiences: jealously, embarassment, hate, and the 3 P’s. If you have read the introduction blog to the Series of Emotions Blogs, I would recommend you to read https://piecesofme.org/2019/05/31/the-emotional-impact-of-being-a-sibling-to-a-brother-sister-with-a-disability/