The Burden of Guilt: Parenting a Child With HS
Truthfully I’m not even sure where to begin, this is a huge and very personal topic. I had a child knowing I had HS and that my child ran the risk of also having HS. Would I change my mind? Never. This kid is the best thing that ever happened to me, HS or not. Unfortunately my daughter, now 12, does have Stage 1 HS.
I worry about her and all of the things she’ll have to go through, just as each of us has. The only benefit she has is that there is no wondering what she has, feeling like an outcast, wondering what is wrong with her with no answer, going from doctor to doctor looking for answers, being told she needs to wash better, being told she’s dirty, being told it's because her 12 year old thighs rub together, or suffering with this disease for an average of 8 years without a diagnosis.
With most diseases, in all the years that have passed, there has been some progression with treatment, better understanding of the disease, how to cure it, why it happens, etc. This disease is the exception; the red headed stepchild of diseases.
It’s infuriating knowing what’s wrong, but not how to fix it, and it has never been more infuriating than when it comes to your child. I can handle it, but my 12 year old daughter can’t and I wish so much that she didn’t have to. I don’t know how to answer the questions about how to make this better, because the only thing i know how to do, like most of us, is power through it.
I knowingly had a child who ran the risk of having HS. I’ve heard from many people that they have pondered if they should have a child on FB groups. I can’t imagine my life without her, but I feel so guilty sometimes. I went to talk with my counselor about it I was wracked with such guilt I couldn't escape. She asked me if I would have chosen differently and not had her, how could someone even ask something like that? Then she asked me the same thing out loud that I was thinking; how could I even think something like that? She reminded me of all of the ways that she will benefit that I didn’t by having me as a mom. This helped me change my mindset on the guilt. She’s fortunate that she has me to help her, lead her, teach her, show her, help her, cry with her, love her, push her, challenge her, drag her kicking and screaming through this hell. I hope to show her through my own experience that this disease is not something to be afraid of, but something that will mold her into the amazing person she’s meant to be.
Every time she has a flare I feel so guilty that she has to endure this pain and discomfort. I wish I could just take that flare and add it to mine. She has seen me cry, writhe in pain, recover from 2 major HS surgeries, brought me meds, helped change bandages, washed my hair when I couldn’t lift my arms, she has watched me pretend like it doesn’t hurt, and enjoy the hell out of my life. I hope that she can allow herself not to be defined by HS, but allow her HS to be a part of what defines who she is. She is strong and in spite of and because of HS. HS is something she can persevere through, be stronger than she ever thought possible, to have empathy for others’ struggles, to build her character and find the deepest self worth possible.
I hope that she will always know her worth, feel supported and loved, not feel alone, know she can reach out for help, that she can have bad days and good ones as well, that flares are temporary, but her ability to persevere isn’t. I hope that she never feels she deserves less than she does because she has HS, that she knows how lovable she is, that she doesn’t accept less than she deserves, that she is chosen, special, and strong, and most of all I hope she never forgets how much I love her.
We are not defined by our HS.
We are worthy.
We are lovable.
We have been chosen.
We have earned our scars.
We are incredibly strong.
We are the faces and bodies of HS.
We are HS.
Written by Brindley Kons for hsconnect.org