Raising a child is hard. Raising a child with HS is even harder. They deal with more pain than any child their age should be familiar with and have a lot to worry about in the way of peer pressure that we, as adults, can mitigate. Depression and anxiety in teens seem to be out of control and adding HS into that mix makes for a potentially more volatile situation.
I was the first in my family to have HS so my mom had no idea what she was doing with me and this disease. My daughter has the benefit of having me go before her on this journey. It doesn’t mean we will have the same journey, but experience is a huge benefit. I won’t have to struggle as much as my mom did to figure out the best ways or things since I have already had that struggle and can hopefully make it just a little better for my daughter. We've had many discussions in our house about things we can do to help with the issues that come up for her which have included underwear, PE, odors, etc.
When asked if we could get some thong underwear, I must admit I was caught off-guard; there was NO way I was sexualizing my 13 year old. I resisted my instinct to tell her absolutely not and instead asked why she would want them. She said that sometimes they’re more comfortable depending on where she has a flare. Well, that answer was more than sufficient, so she is now the owner of thong underwear.
We also purchased sports bras for her to wear around the house as those were more comfortable for her, especially during distance learning. We are working on finding good push up bras that have no underwire to try and avoid causing flares in that area for her (although she’s not small chested and is concerned as a 13 year old would be with how they look more than comfort)!
We also asked for a note from her dermatologist excusing her for the whole year from PE if she didn’t feel that she could participate (this was last year, no need for it so far this year). This enabled her to be in control of the situation and use her judgement since no one knows how she feels other than her. She ended up using it only twice during the year, but the peace of mind it provided her was invaluable.
Things like the thong discussion are just another area where my daughter has surpassed me, just as you’d hope as a parent. We’ve had to do some thinking outside the box in the last few years. We’ve tried more underwear than you can count. I’ve passed on some of my tips and tricks to her and she’s starting to figure out some of her own. I have told her about my struggles of keeping this a secret for 29 years and hiding it from the world and hope that she feels more courage than I did to embrace the person it makes her rather than hiding.
I want to teach her how to be in charge of her illness. How to be empowered. How to not feel guilty about making choices for her health both physically and emotionally. How to say ‘no’ when she really can’t. How to push forward when you have just a little left inside. How to know when she needs to step back and take a break to conserve what she has. I want her to understand her strength and that part of who she has become and will continue to become is because of this disease.
I know it’s not the norm in some of these cases, but if you’re parenting a child with HS, please consider some of the above suggestions. Please ask them what they think would be helpful for them with their disease. I encourage you to think outside the box to help them see what other solutions there could be. I implore you to let them feel safe and comfortable enough to ask you for what they need to help. We have so little control over this disease, what control we can give them will be most helpful.
Written by Brindley Kons Brooks