It’s all about communication
What and how you communicate is important for navigating the ups and downs of living with a chronic disease such as hidradenitis suppurativa. If your child is newly diagnosed, you may be adapting to a new way of life. If your child has had hidradenitis suppurativa for a while and is now entering the teen years, new challenges may arise. Whatever the circumstances, it’s important to keep the lines of communication open within your family and your support system.
Tips for communicating with your child
Encourage your child to see the big picture.
Hidradenitis Suppurativa disease doesn’t have to take control of your family’s life. It needs to be put into the right perspective. Offer hope and encouragement that helps your child see the bigger picture in life while acknowledging the current issue.
Reinforce the following basic messages at different times and in different ways:
• “You are not alone. Millions of people have hidradenitis suppurativa.”
• “This disease can ebb and flow depending on what happens in life. Flares and remissions are all part of the disease. When a flare occurs, let’s look at our options and what we can do. We can always consider new treatment options.”
• “It’s not contagious, nor is it life-threatening. You can’t spread it or catch it from anyone.”
• “Hidradenitis Suppurativa is not your child's fault. They didn’t do anything to make it happen. It’s something they were born with, like the color of your eyes or hair.”
• “Hidradenitis Suppurativa disease is not who you are. It doesn’t define you as an individual nor what you can do.”
Actively listen to your child and encourage communication of feelings
As a parent, it’s hard not to give advice. You want to help your child and solve problems. Sometimes listening is the best first step towards fostering open communication and solving problems together.
• Listen to your child’s comments and questions without distractions or mentally preparing a rebuttal. For example, when your child questions why people treat him or her differently, respond by bringing together the facts related to the problem. This indicates your understanding and you can also use this approach to try to draw out more information. You could say: “So, it sounds to me like you don’t like it when people stare at you because you feel they are treating you differently. I understand why you are feeling upset and I feel the same way. What do you think would happen if you approach people who treat you differently? What can you do that might make this situation better?” During this type of conversation, encourage your child to communicate about how he or she feels about having hidradenitis suppurativa, and how to respond positively when faced with adverse situations.
• Remember non-verbal signs are just as important. Smiling, nodding or direct eye contact help show you are actively listening. This may also encourage your child to be more open and honest about how they feel. Also, don’t forget to look for non-verbal signs that your child may show – glancing away, dropped shoulders or head. Try not to show negative facial expressions since that is something your child will pick up on, too.
• Help your child become resilient. Identify positive reactions to counter negative situations such as educating to those who are ignorant about the disease to raise awareness and increase acceptance. If that doesn’t work, teach your child to move on and brush off displays of ignorance.
Above all, respect your child’s feelings and recognize the pain, but try not to overreact or focus too much on the disease. Everyone has something that makes her or her different. Hidradenitis Suppurativa is just one part of who your child is.
Don’t be the “helicopter” parent
Hovering over your child or nagging about treatment regimens will only build resentment and complicate open communication. Don’t blame your child for flares or nag about treating his/her skin.
Instead, think about your choice of words or how you ask questions. Help your child to understand how important it is to stick to treatment schedules and why you ask questions. Share your feelings or worries.
React calmly. If you overreact, your child will remember and avoid the same confrontation in the future. By letting your child know you are listening, he or she will more likely be honest with you no matter what occurred without worrying about nagging or negative responses. Recognize mistakes happen and turn attention towards finding a realistic solution. As your child grows older, he or she may turn to friends for support instead of you. That’s normal. The critical point is, keep the lines of communication open.
The home team
Remember siblings are affected, too
In addition to caring and communicating with the child who has hidradenitis suppurativa disease, it’s important to help siblings understand the disease, too. Talk with siblings and emphasize hidradenitis suppurativa is not contagious. Talk with them about their feelings and encourage them to open up. Each child is different and may accept the diagnosis differently. Discuss the treatment options and how they may be able to help without placing too much responsibility on them.
Develop family routines and rituals that involve all family members based on what each person may be able to do. Having regular routines helps reduce stress. Above all, treat each child fairly, make time for them and let each one be the individuals they are. Hidradenitis Suppurativa disease shouldn’t change family dynamics.
The parental team
Proper communication is also important between you as parents – to work together as a team on behalf of your child with hidradenitis suppurativa disease or other members of your family. Here are a few tips to help:
• Make treatment decisions together and be consistent on how you deliver those decisions.
• Recognize that you represent the role model. Your child looks to you for guidance and follows your lead in how you react to problems. Talk positively about managing hidradenitis suppurativa, yet don’t let it be the focus of your lives together.
• Talk with your child about your feelings, including fear, anger, resentment or sense of guilt. Talk at a time when you’re open to solutions and not when you’re angry.
• Move on quickly from mistakes and find solutions together.
• Take care of yourself first to ensure you are strong enough to take care of your child. If you need help, ask for it. Or connect with one of our One to One volunteers or Advocacy volunteers. They understand what it means to have a child with hidradenitis suppurativa disease.
Communicating with others in your child’s life
Communicating with your child’s health care team
Preparing for appointments and asking the right questions on behalf of your child will help ensure you have a positive experience with your health care provider team and receive the most appropriate treatment.
Tips to help prepare for an appointment include:
• Bring a list of current and past treatments, side effects, and what worked or didn’t work for your child.
• Identify a list of questions you would like to ask your child’s provider and prioritize the list based on what you need to know versus what could wait given how long your appointment will be.
• Help your child learn how to be an active participant in appointments such as by explaining his/her symptoms, what may have triggered a flare, and how the disease impacts his/her life. journal to help make discussion easier.
• Ask your child in advance if he or she prefers to not discuss certain issues with a provider. There may be other ways to approach such issues without embarrassing your child.
• Be informed about the disease and what treatment options are available – including those that are recently approved. This also includes being aware of your insurance benefits and what treatments will be covered. Knowing this in advance will help save time and avoid stress later.
Learn other tips for preparing for an appointment.
During the appointment:
• If you’re not sure about something said, such as when to apply a treatment, ask for clarification.
• Questions about treatment options could include:
◦ How long has this treatment been used for children with hidradenitis suppurativa?
◦ How quickly and how long will it work?
◦ What are the common side effects and will they go away if treatment is stopped?
◦ What monitoring is needed for side effects?
◦ What are the potential benefits?
◦ Can the treatment be stopped suddenly or gradually?
◦ What are the other treatment options?
• Be sure to talk about treatment goals. When should you expect a treatment to work for your child, and if it doesn’t, what are the next steps? Knowing this information in advance will help you and your child determine if other treatment options are needed.
• Be assertive, but balance your assertiveness with understanding. Other staff members may be able to help you.
• Voice appreciation for all that is done on behalf of your child. Your appreciation will always be remembered and will work wonders when urgent issues occur where you really need help.
Your health care provider is part of your child’s support team. Working together will help make life easier for you and your child.
Communicating with others about your child’s hidradenitis suppurativa
One of the best things you can do is teach your child to be their own advocate. Work with your child to identify language that feels comfortable yet briefly provides education about their disease. When opportunities to provide education come up, let your child try first and then see if they need help. For example, when someone at the grocery store continues to stare at your child, you and your child can either ignore the individual or simply say:
“I have [or my child has] hidradenitis suppurativa, which is a genetic skin disease that causes nodules, lesions and pus-seepage, and skin inflammation. Don’t worry, it’s not contagious.”
If your child wants to offer more details, that’s their choice. The situation will determine how much to share. Some people will ask questions and want to know more. Others want to make sure they can’t catch anything, so keeping the response brief will work best. It’s possible the person staring may also have hidradenitis suppurativa and isn’t sure how to bring up the subject. Use your best judgment regarding the circumstance and help your child find the best response.