I. Caring for A Child with HS by Brindley A. Brooks

Whether or not you have HS yourself, parenting a child with HS presents unique challenges. You have already taken the critical first step in learning how to advocate for your child by educating yourself!

The toll that HS can take on your child’s self-esteem is immeasurable. This disease is not their fault, nor is it yours. Triggers for each person differ greatly—this is not a one-size-fits-all disease. There is no cure, and treatment options are currently limited. Building and maintaining trust with your child about their HS is the best thing you can do.

Helping your child understand the difference between pain and discomfort is important. This is crucial to most everything else having to do with their HS. Empower your child to decide what they can and cannot do; this is especially hard for parents who think they know best (like me)! When they tell you they cannot do something, listen. This doesn’t mean not to challenge them, but it does mean they need to determine their limitations. There are many of us who, despite having HS, have successful careers, marriages, kids, and lives.

The teen years are by far the most difficult. The social implications are far reaching: the odor that can accompany abscesses, an abscess draining unexpectedly during school, changing clothes in physical education (PE) class, or the “HS walk” when you have a groin flare.

Being understanding and supportive is oftentimes all you can do, and all your child needs. Be a safe place for your child to land. Be open with your communication, ask questions, look at the wounds. Check in often with your child on their mental health status. Depression rates are much higher amongst HS patients than others.

Advocating for your child can look like any of the following:

• Sending a letter to the school outlining the condition, what your child can or cannot do, and why they may ask to use the restroom more than other students.
• Asking your dermatologist for a note to excuse your child from PE during the school year, when they do not feel that they can participate.
• Listening to your child when they tell you what they need and accommodating (as much as possible). If they say they are too uncomfortable to go to school, listen.
• Encouraging them to carry on with life despite their HS, but in relation to what they physically can or cannot do.
• Understanding that, just because an abscess is not large, it does not mean it’s not as painful as a large abscess.
• Helping them learn how to cope with the pain that comes with HS is challenging, as the normal pain treatments (such as opioids) are not typically used for children, and can lead to dependency. Finding an alternative pain control method is highly suggested.
• Talking through options with the dermatologist AND your child, their opinion matters. In my experience, some of the proposed treatments can have side effects that may be worse than the disease itself (i.e., Vitamin A derivative treatment) so please familiarize yourself with the treatment options. Do not be afraid to stand up for your child at appointments; it is your responsibility to be as knowledgeable as the doctors you are seeing, to ensure the best care for your child.
• Getting help and support for yourself. For as much support as you offer them, please be sure you have a place to get support for yourself as well. You will need assistance in navigating through this journey with your child, just as much as they need you.

II. Caring for A Partner with HS by Lucas Swihart

Many people do not choose to become a caregiver of an HS patient—it just happens. When I met my now-wife, she was very independent and lived an active lifestyle. Little did I know she also dealt with a serious skin condition called Hidradenitis Suppurativa. She did not try to hide it from me, it was something that she did not even know had a name. Her symptoms started when she was about 15 years old, and she was not diagnosed until she was 38, when the disease became a focal point in all our decisions.

For everything we chose to do, we had to take into consideration if she would be comfortable enough to enjoy it, if it was even possible, and, if we partake in this activity, will it be worth the outcome we will most likely see in the next few days? So I have gone from seeing my wife live with this issue when it was very manageable to seeing her lying in bed crying, unable to find comfort. I chose to stay by her side and help her as much as I was capable of at that time. I hope that the following words I share will shed insight on how you can help your loved one with HS.

Be present. Being with the person, both emotionally and physically, is important, and not an easy role. Emotionally, it can be very draining. It is hard to watch someone continuously be beaten down. Every time we thought we were getting a foot in front of the other, we were taking two steps back. She experienced severe anxiety and depression and, at times, could not leave the house. The life she was used to was slowly being taken away,
and, at times, I did not see it. I did not see her emotional turmoil or the anxiety she was facing. I have learned to be empathetic by trying to put myself in her position, to just imagine what thoughts and feelings are going through her head. Be there physically, because they will need you in ways that we do not realize.

Be supportive. While offering support, it is also important to know when to back off. This is easier said than done. Watch and offer assistance to make it easier on them; just remember they may be in denial, or struggling with how to ask for help. If they snap at you, remember to stay calm and take mental note of what could be done differently, or addressed at a more appropriate time. Instead of coming to the rescue each time, let them try to find a way that works for them.

Be Understanding. Remember to be understanding of all the changes your loved one is going through. They are fighting a battle within themselves, and we sometimes get the backlash for things out of our control. I am not condoning verbal or physical abuse, but things may be said that are not directed towards you, but said out of frustration.

Be Prepared. So far, we have mentioned the need to be present, supportive, and understanding. I would like to end with being prepared. You must be prepared for everything at all times, from emotional roller coasters (you will never know what will trigger a breakdown), first aid needs, and new life changes. Regarding first-aid needs, be on the lookout for lost gauze when out in public and even at home. You never know where they might fall out. And whatever you do, do not make a big deal with an “Ewwww, is this yours?” Just pick it up or ask nicely, “Did you drop this?” Learn to have a never ending supply of bandages of all sizes and types, in every vehicle and at home. You will need them at some point. More than anything, keep letting the person you care for know they are still special to you, attractive, and that you love them just the same as the day you first fell in love.