Discussing Hidradenitis Suppurativa with children

Talking to children.

Talking to your children about Hidradenitis Suppurativa can be a scary task. Deciding how much to say, and how to say it can be overwhelming. Fears about your children’s anxiety and stress in response to this can all seem daunting. Children are very perceptive and usually know when we are not being honest with them. Trying to provide information in a simple language so your children understand can also be difficult, it is best to answer any questions directly and honestly. You might have questions about how to explain Hidradenitis Suppurativa to children or what to say to them. Your children’s health care providers can also give parents specific suggestions regarding the particulars.

Explaining the Diagnosis.
Talking with your children soon after the diagnosis is given is usually the best. Sharing information early on will help build trust and better understanding. When children know they are being kept informed, it helps make the experience less frightening. This is not to say that talking about Hidradenitis Suppurativa is easy. Here are some tips for talking to your children about a Hidradenitis Suppurativa diagnosis:

Educate yourself about your HS. It is very important that as a parent, you understand your own diagnosis. Information can be empowering. The more information you have about your condition, the more your family can be prepared about what can be expected. Having knowledge about your condition will also enable you to discuss any questions your children may have about Hidradenitis Suppurativa. Many parents are afraid to ask questions or tell a physician they don’t understand something. Remember, learning about your diagnosis is a process. It’s normal to have many questions and it can be helpful to ask your physician to repeat information. Ask questions until the information is clear to you. Some parents find it helpful to keep a small notebook in which they can write down questions (and answers provided by the medical staff when the questions are asked) regarding HS and treatment plans.

Prepare what you want to say. Many parents find it helpful to practice or write down what they want to say before the first conversation. Others feel that having their spouse, partner, close friend, or a relative with them makes it easier. Sometimes choosing a quiet time when you and your children are rested can make the conversation less stressful. If you have children of different ages, you might speak with your older child first. Perhaps, the older child will want to help you tell your younger child. Try to have these conversations as close together as possible so that all members of the family are aware of the situation and have a chance to support each other.

Set the tone. As important as what you say is, how you say it is just as significant. Try to use a calm and reassuring voice. It’s okay if you become sad or feel like crying. Some adults and children who think of crying as a sign of weakness will bottle up their feelings inside, causing more distress. However, crying can be a good way to cope. When a parent expresses sadness through crying, it shows children that it’s okay for them to do the same. If your children become upset or wander off, tell them that you know this is a tough conversation and you understand how they feel. You can always come back to it later.

Remember that children tend to have short attention spans. Try not talk longer than they can listen, but be sure to ask them if they have any questions. If you don’t know the answer, let them know you will find out and get back to them as soon as possible. This teaches children that although parents don’t always have all the answers, they will do their best to help. This also lets children know that they have permission to ask any questions they like. When speaking with your children, use simple terms. For example, you might say: “Mommy is sick with a skin condition called Hidradenitis Suppurativa (aka HS). The HS happened on its own—nobody did anything to make it happen. I have very good doctors, and I am going to do everything possible to get better.” It is also important to let children know that HS is not contagious. Young children often think of being sick in terms of catching germs. Let them know they can’t catch HS like a cold. Tell them you can hug and kiss each other just like always.

Understand how your children process information at different developmental stages.
When talking with your children, use words that are familiar; your children will have an easier time understanding what HS is and what to expect. Keep in mind that children at different ages have different ways of understanding things. [1] No matter what the age of your child, it is helpful to know and understand the developmental stages and how children at each stage can be expected to respond to stress and change. The age and goals of your children at each stage will guide you through how and when you need to intervene when your family goes through a crisis.

Infants and toddlers: As adults we usually assume that an infant is too young or unaware to notice a change in a parent or family. However, infants and toddlers are extremely intuitive and can sense when a parent is upset or anxious. When a crisis occurs, you may see the following behaviors: increased crying and irritability, changes in appetite and sleep schedules, clinging behaviors and regression. This first development stage is probably the easiest in terms of knowing how to respond. The child is completely dependent on the mother (or primary caretakers) to have basic physical and emotional needs met. Infants and Toddlers are beginning to develop trust and sense of security. They generally have very little understanding of illness. Children at this stage can be most afraid of being separated from their parent and of medical procedures they don’t understand. If your toddler asks a question about your HS, answer openly and honestly. A rule of thumb is never offer more information than the child has requested. Concealing the condition or whispering about what is happening will not help. Children always suffer more from the tension of not knowing rather than from knowing the truth. Allowing the children to act out fears and frustrations through play or art is also an excellent help.

Preschoolers: Preschool children are beginning to develop a sense of independence. They may understand what it means to get sick, but they may not understand the cause and nature of illness. Children this age do not understand the concept of death. To a preschooler, anything that happens, good or bad, is related to them and their behavior. If a parent becomes ill during this stage, the preschooler’s view will be: “Mommy is sick because I told her she was mean.” In response to stress and change, preschoolers often present with extremes, either being all good or all bad. This is the children’s attempt to maintain a sense of control and to feel less frightened. Regressive behaviors are likely to occur, especially an increased reliance on a favorite security object. Remember to assure them that none of this is their fault. Returning to a security object should be encouraged. Children at this stage are afraid of being hurt and of pain. It is usually best to be honest about tests and procedures that may hurt and explain that the treatment is being done to help make you better. A parent being in the hospital or adjusting to your medication schedules can challenge the children’s developing independence. Your children may try to counter lack of control over their world by challenging limits set by parents. Parents can help by being firm with things the children do not have a choice over, but by offering choices over flexible aspects of treatment. (For example, “Which do you want me to take first, the blue medicine or the pink?” or “Do you want to sit on my lap while I have my blood drawn or in the chair with me holding your hand?”) Answer all questions honestly, including those about death. This is a good time to rely on books which help you help your children work through complex and often frustrating feelings about illness.

School-agers: Early School-aged Children are developing a sense of mastery over their environment. Children at this stage are more likely to understand that you will need to take medicine and undergo other treatments in order to get better. Don’t be surprised if school age children are mainly concerned about themselves. “Who will take care of me?” or “What will happen to me if you are sick?” are common questions. This self-centered thinking is normal. Although there is still some overlap with magical thinking, school-agers realize that this condition is not their fault. However, they are still not mature enough to remove themselves completely from self blame in these situations. The thinking now is: “If I’m good, Mom will feel better and things will be fine.” They can understand reasons for the condition but these reasons may not be entirely logical. They may believe the condition was caused by something they did. They should be reassured that the condition is not their fault. Schoolagers see the world from their point of view and do not see the larger picture until they get older. Letting them know that they will be taken care of and that you will have a plan in place will help them cope with any changes to their routine. Schoolagers are better able to understand abstract concepts, such as time. It will be easier to explain how long you may be in the hospital or if you will be away receiving treatment elsewhere. And while they will understand the concept of death, they will also be more likely to worry about it.
If your children say anything that indicates they are equating a parent’s condition with possible death, it’s important to encourage the children to talk about those fears.

School-age children tend to show strong emotions in reaction to change. They may show anger at both parents: “Why did you let this happen?” They may tend to have a lot of physical complaints, especially when leaving for school. They are often scared to leave the ailing parent; and often assume a protective role. As such, preoccupation and fear of death may be common. When attempting to help school-age children, it is important to recognize that angry outbursts are an attempt to grieve or release fearful feelings. The opposite reaction, denial, may also occur as some children hope that the condition will just disappear. Although your children will have many more questions and concerns at this stage, only the simplest explanations need to be given. Questions about death should be answered directly. Older School-aged Children, although capable of understanding illness and its treatment, should not be expected to react as adults do.

Teenagers: Talking to your teenager about a Hidradenitis Suppurativa diagnosis, treatment, and prognosis might be one of your biggest challenges. Peer pressure, demands of school, and worries about the future are common challenges for teens. If on top of that a loved one is diagnosed with Hidradenitis Suppurativa, teens may have an especially hard time. This doesn’t mean they won’t be able to cope. But it does mean teens are likely to have different needs than younger children. Teens are developing self-identity and independence and are known for their fluctuating moods. When a crisis occurs, you may see and hear even more expressions of anger, hurt and confusion. The opposite extreme is also common. They may withdraw completely and not want to discuss your condition or their feelings about what’s happening. It is normal for them to be embarrassed by the condition and not want to discuss it with friends or teachers. Accept these feelings without overreacting to their tone. These outbursts are often fear-based. Often when teens feel out of control, they cling to the hope that parents and family will remain structured and safe. Remember, even though they appear grown, your teen needs as much love and reassurance as your younger children.

Teens are most likely to think about your condition in terms of its symptoms and its impact on their daily activities such as school, sports and relationships with friends. Teenagers are capable of understanding the relationship between symptoms, condition and the role of treatment. They can understand a complex explanation of the condition and may have many detailed questions. As for teens, even though they can understand more information, they have a tendency to worry more about the information they’re given. When you decide to talk about your HS, be prepared to give much more detailed information, especially all the facts about the condition. A major concern or fear will be: “Will I get it too?” Some teens may not want to hear about or discuss your condition. They may feel angry or disappointment toward the ailing parent. These behaviors serve as coping mechanisms to help deal with their own fears or feelings of inadequacy in controlling the changes that are occurring or may occur in the future. Talking honestly and openly about your own feelings may help them to express theirs as well. One of the most difficult obstacles for parents to overcome the expectation that they will be mature enough to handle the situation and to provide support.

Here are some tips for talking to teenagers:

Be prepared with specific information about diagnosis and treatment. Answer your teens questions openly and honestly, and let them know of people and places they can go for more information.

Respect their privacy. Teens may want to talk to certain people about your HS. Make sure there are other people they can go to, but let your teens decide. Strive for consistency. Allow them to spend as much time as needed seeing their friends, keeping up with school work, and going to social activities. Let them know that you think it’s important for them to be teenagers and that it’s okay to have fun in spite of coping with HS.

Avoid role reversal. When a parent or loved one is sick, teens may feel the need to take on the role of caregiver—whether it involves caring for the parent or loved one who is sick or perhaps younger siblings. However, it’s important for teens to know that they will continue to be cared for. Acknowledge their concerns, but reassure them that their responsibilities of being a teenager have not changed.

Be aware of their special concerns. Teens might have special concerns such as “Will I get HS?” Check with your medical team about how to best answer these questions. In addition, your teen might be concerned about the cost of treating your Hidradenitis Suppurativa and wonder if there will be money for college or other big expenses in their lives.

Above all, it’s important to be honest, and to be available for questions and discussion. No matter what their age, it’s important to let your children know that what they are feeling is normal and okay. Finding out what they might have heard about skin disease is helpful in order to clear up any misinformation. Be honest and hopeful. Having frequent conversations will help your children feel safer and more secure.

Help your children deal with their feelings.
It can be difficult to predict how your children will cope with the knowledge of your chronic condition. Providing support, listening, and discussing their feelings can increase their way of coping with the condition. Some children may resist discussing their concerns or feelings in order to protect you from becoming upset. It is important that they feel that they can talk to you about any concerns or feelings without fear of being judged negatively or causing you to become overly upset. And although your children’s thoughts and feelings about HS may change over time, they are equally important right now. Let your children know they can always come to you and that you will tell them the truth. Be honest and hopeful. If they have trouble talking about Hidradenitis Suppurativa, suggest to your children that they try writing down their questions and concerns.

Understand your own coping process.
Hidradenitis Suppurativa changes your frame of reference and impacts routines and future plans. You may have many emotions and feelings about your diagnosis and are trying to maintain a strong, brave face for your children. It is normal have many emotions. It’s perfectly normal to feel overwhelmed, sad, disappointment, grief and frustration for the way you imagined your life would be. It’s okay to have wishes. It’s okay to have fears. It’s okay to feel angry. Caregiver burnout and stresses on relationships in the family can be overwhelming. Some families benefit from the support of a counselor to help make the adjustment of living with a chronic condition and learn how to relieve tensions.

Prepare your children for medical procedures.
It is helpful for children to know what to expect in their lives as much as possible. Facing unknown medical procedures can cause children increased anxiety and stress. [2] Many parents may think they are protecting their children by not telling them about upcoming procedures that may be uncomfortable or painful. Preparing children for your upcoming procedures can actually decrease anxiety and stress for them. Children sometimes worry more about the unknown. Parents and the medical staff should explain why the procedure is being done, who will be doing it, what equipment will be used, and whether or not it will be painful or uncomfortable. Most hospitals have children specialists who can help prepare children for your hospitalization, surgery, and various medical procedures. You can request information from your health care providers regarding how you can best help prepare your children for specific situations.

Help your children lead as normal a life as possible.
This balance can be quite a challenge for parents. One way to provide some normalcy to children is to give them responsibilities. Just as children need discipline, they also need to be given responsibilities. Encouraging responsibility is one way to help the children lead as normal a life as possible. Be consistent in your requirements and be prepared to provide consequences if chores are not completed. Also, remember to acknowledge and offer praise for chores that have been done well. Children need to feel like they belong. It is important for parents to encourage participation in various activities that involve other children of the same age and to give children opportunities to spend time with friends.

Maintain family routines as much as possible. Children typically do best when their daily routines are predictable and consistent. Of course, this is not always possible, but an effort should be made to maintain regular routines and schedules for all family members.

Teach your children coping skills.
Children need to learn new way of coping with special challenges of HS. Validating your children’s feelings and normalizing their experience can help them feel more comfortable with their thoughts and emotions. Talking with your children about how your condition is affecting them and finding ways to help solve problems or cope with those feelings is very helpful. [3]

Use games or arts-and-crafts projects. Children are more likely to identify and communicate their feelings through play activities. They will tell you how they feel just by drawing a picture of something that’s on their minds.
Schedule family update meetings. Meetings when children can discuss what’s on their minds, share how they are feeling, and find out new information.

Try to spend relaxed, stress-free time with your children. Try to talk about their hobbies, school life, friends, and activities. Help them feel free to talk about fun things. Let them know that Hidradenitis Suppurativa is only one of many things to talk about. Enjoy being together.

Give your children some choices. Many children coping with chronic conditions tend to think they have little control over their lives. Therefore, it is important for parents to help their children build a greater sense of control. This can be done by offering your children choices whenever possible. When appropriate, it can also help to have your children participate in making choices regarding treatment.

If you help your children stay informed and connected, they will have an easier time coping with the changes that Hidradenitis Suppurativa brings. Let them know that strong feelings are normal, and encourage them to speak freely and openly.

Set up a support system.
Building a support system for you and your family is important. We were not meant to go through this alone, and having someone available if you or your children need additional support is essential.

Prepare your children for communicating with others. Children with loved ones fighting chronic conditions often don’t know how or what to tell others about. You can help your children by suggesting various simple and concise explanations of the condition. It may help for the parent and children to role-play examples of providing explanations and answering questions others might ask.

Let others help. You should not try to do everything yourself. Let family members and friends help. When others ask how they can help, have a list of things that need to be done from which they can choose (e.g., grocery shopping, errands). You should have others help in a way that decreases your stress and will allow some time to relax.

Connect with other families. Many families and children coping with a chronic condition feel different and isolated. Being around others with the same challenges often helps decrease isolation and provides support. You should also try to contact others in your area with the same struggles who are coping well. Your children’s health care provider may be able to offer advice regarding this subject.

Discussing Treatment.
Whether you choose to talk about your or a family member’s treatment plan early on or later, the important thing is to keep your children informed. Since treatment may bring many changes in your family’s day to day life, encourage your children to ask questions if they are concerned or confused. Here are some suggestions for talking to children about the treatment plan:

Let children know about any changes to their routines. When talking about treatment, many children want to know what it will mean for them. For example, if Mom is in the hospital, who will take them to school, make dinner, or take them to after-school activities? Let your children know these concerns are important to you, too. If you don’t have your support team in place yet, reassure your children that there will be a plan and that you’ll let them know about it.

Prepare children for possible treatment side effects. Watching a loved one experience side effects can be upsetting to children. Medicines that are used to treat Hidradenitis Suppurativa can cause hair loss, weight loss, lethargy, or nausea, for example. [4] [5][6] If children understand in advance that the side effects are part of the treatment and not part of the condition, they can handle things better. For most children, you do not need to go into a lot of detail about side effects. For example, you might tell a child, “Grandma has to take very strong medicine to fight the HS. It might make her really tired and feel sick, but it will be from the strong medicine, not the Hidradenitis Suppurativa.” If surgery is involved, you might say, “Your father is going to have a treatment that might make him very sore and tired. When he gets home, he will need lots of rest,” or “Grandpa may not be able to play with you as often as he wants, but he loves you very much.” Because different people respond differently to treatment plans, let your children know if you’re not sure about what the side effects might be. Reassure them that you or another important person in their life will help them prepare for any changes. Providing this kind of comfort and support shows your continued love and caring for your children during a difficult time.

Help children stay connected during treatment. One way to help your children cope with HS is to help them feel connected while a loved one is in treatment. For example, if you’re going to be in the hospital, your children might draw pictures for your room or send cards. If you’re able, you might want to make a drawing or send a note home to them as well. Letting your children know how much they are loved will make it easier for them to cope. Helping children stay connected at home is also important, but it might be difficult for the person with Hidradenitis Suppurativa to do some of the things they were able to do before. For example, Hidradenitis Suppurativa and its treatment options may prevent a parent from lifting or carrying a toddler or young children. The children may miss this and want to be close. By hugging each other from a seated position or lying down with the children on the floor, couch, or bed, they can be at eye level with you and feel comforted. Activities, such as watching TV or talking about their day at school, can also bring a sense of togetherness.

You may also find that your children want to help but don’t know what to do. Giving children simple tasks, such as bringing water or an extra blanket to the person with HS, helps them feel connected. Teenagers can take on larger tasks around the house, such as washing dishes or mowing the lawn. But they shouldn’t be expected to handle adult responsibilities, such as paying bills. Let your children know that you are thankful if they want to help, but that you don’t expect them to take care of you all the time. That is not their job. Their job includes things like going to school, doing their homework, seeing friends, playing sports, and having fun. Children should not feel guilty about being children. Let your children know that although you (or another family member) have Hidradenitis Suppurativa, it is not all that your family is about. Remind them often that no matter what changes HS might bring, your love for them will never change.

Talking About the Prognosis.
As with any discussion about HS, consider the age of your children when talking about a loved one’s prognosis—the long-term outlook for recovering from the condition. Give only as much information as needed. The most important thing is to let your children know you will be honest with them and that they can come to you with their concerns. Try to watch out for any emotional changes in your children that might indicate they are stressed from worry. Check to see if they might have misinformation. Sometimes children hear something misleading from other people and imagine something that isn’t true. No matter what the prognosis, some children will want to know from the beginning if their loved one is going to die. You can start by saying that, with the doctor’s help, their loved one will be doing everything possible to get rid of the HS and get better. If the HS is advanced and aggressive, you can still tell your children that the doctors are doing their best to treat it and that you’ll let them know how the treatment goes. Again, be hopeful. Your children will take their cues from you. Often, it’s a good idea to speak with a professional counselor if your children have questions about death and dying. Young children and older children understand death in different ways.

Ask for guidance.
When it comes to having serious family discussions, we often feel like we should have all the answers, and not ask for outside help. But that is not the case. It’s okay to ask for help, especially when it comes to a medical diagnosis such as this. If you need guidance before talking with your children or at any time afterward, contact a professional. A team of professionals can help you find age-appropriate ways to answer your children’s questions and concerns and can refer you to helpful resources.

Doctors can offer great education materials, as well as referrals to mental health professionals.

Social workers can offer resources to programs and other helpful support in your community.

HSSUPPORT and HSAWARENESS provide free education, awareness programs, and support for all families coping with Hidradenitis Suppurativa. All services are free of charge.

Learning that someone has Hidradenitis Suppurativa is an emotional experience for children. They might feel afraid, confused, guilty, or even angry. In fact, they are likely to feel different things at different times. Remind them that these are normal feelings and it is okay to talk about them.

Work with your children’s school. Many chronic conditions can disrupt a children’s learning. It is important for parents to meet with teachers, the counselor, and principal to explain their condition and the potential impact on school. Again, don’t be afraid to ask for help. Schools work with community programs and can offer resources, and community support as well. Programs such as homework help, mentoring, health drives/fairs (immunizations, health screening, etc), food programs, school supply help and emotional counsel are just some of the things most school districts provide.

Writing a letter/email: You might also consider writing a letter or email to your child’s school to tell them about the situation, and include a ‘school plan’ (What the plan is if you become unwell and are unable to do school-related activities like making your child’s lunch, taking them to school or picking them up). Making your wishes clear in a written plan for the school is a good way of ensuring they will provide the support your child needs. This plan could be similar to your family plan, with clear information about what you want the school to do, and what you don’t want them to do to support your child. You could also consider getting your GP or a mental health professional to do this with you.

The most important things to remember while trying to establish ongoing communication are:
1. That the children’s loved one is indeed very sick and will be undergoing treatment.
2. Do not promise children that their loved one will not die; rather, say that most people today do live a long life, that if they do get sick there are many more ways to help them and that you are taking care of yourself and others in the family to help achieve that.
3. Explain how treatment will affect the loved one. Will there be a loss of hair, a loss of energy, a need to travel for treatment?
4. Explain how the children’s life will be affected. Will routines change, will there be a change in caregivers?
5. Finally, bring up these issues on a regular basis, as children may hesitate to ask questions if they sense that doing so will make you uncomfortable.

[1] source: http://www.rsd.k12.pa.us/Downloads/Development_Chart_for_Booklet.pdf
[2] source: http://www.chop.edu/health-resources/preparing-hospitalization-and-medical-procedures
[3] source: https://psychcentral.com/lib/the-dos-donts-of-teaching-your-child-to-cope/
[4] source: http://www.emedicinehealth.com/antibiotics/page4_em.htm
[5] source: http://www.cancer.net/navigating-cancer-care/how-cancer-treated/radiation-therapy/side-effects-radiation-therapy
[6] source: https://www.hopkinslupus.org/lupus-treatment/lupus-medications/immunosuppressive-medications/

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