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The emotional impact of hidradenitis suppurativa disease

Not only does hidradenitis suppurativa affect a teen physically, it also affects:

    •    How they view themselves and interact with the world around them.

    •    The activities they choose to be involved with.

    •    Who they choose to be their friends, and the interests they develop.

For some teens, having hidradenitis suppurativa has little impact or emotional response.  For others, it can have a huge effect on a teen’s mood and how he/she sees themselves.  Knowing what to expect and how to cope will help you and your child move through emotional changes associated with having hidradenitis suppurativa.

Hidradenitis Suppurativa disease presents emotional responses that ebb and flow with flares of the disease:

  • Embarrassment Anger               
  • Envy or jealousy               
  • Happy
  • Fear                                           
  • Loneliness                       
  • Introversion
  • Frustration
  • Depression                            
  • Sad
  • Joy                                              
  • Insecurity                       
  • Confusion                                  
  • Hopeful
  • Self-loathing                           
  • Confidence                       
  • Anxiousness                               
  • Hesitant

Recognize that coming to terms with the disease may take time and talking about feelings is just as important as managing the physical aspects.  Some of the feelings mentioned above should not be dismissed and can have significant impact on your child’s self-esteem if not addressed early. (Especially if signs suggest depression, apathy or anger.)

What can you do?

Be supportive, but don’t focus too much on the disease.  Drawing too much attention to the disease may make your child feel different.  If you use embarrassed or negative tones, your child may feel hidradenitis suppurativa disease is something to be ashamed of.  It isn’t.  Acknowledge the management aspects of the disease, but focus more on your child as an individual and their day-to-day accomplishments such as “What happened in school today?” or “Wow, you played a great game tonight.”

Help your child identify and express their feelings.  Talking about how he/she feels when the disease flares can help.  Does your child feel anger, frustration or confusion as to why it’s happening again, or like it’s his/her fault because they did something to cause the flare?  Or do they ask, “Why me?”  Apprehension about hidradenitis suppurativa returning or getting worse is common.

Talk through such feelings, indicating it’s normal to feel these emotions. Explain that it’s the nature of the disease to come and go, and that your child didn’t do anything wrong.  The disease is unpredictable. Talk about potential triggers and make journal notes in the symptom tracker to discuss with your child’s doctor. You could say, “Having hidradenitis suppurativa is just like having blue eyes or dark brown hair.  It’s part of who you are.  It’s not your fault.” Or “It’s not clear why some people have it and others don’t.”  By talking about feelings, you might be able to identify solutions to help your child feel better.

Tip: Help young teens learn how to identify their feelings by making a list of feelings or use faces like emojis to describe how they feel.  He or she can choose a feeling on a list or point to a face that represents how they feel on a particular day.

    •    Be careful what you say about your teen covering up his/her hidradenitis suppurativa.  Encouraging your teen to cover up may make them feel like they are different and you are embarrassed by their disease. Let your teen decide if they want to flaunt their flares and teach others about their disease.  More and more people are becoming aware of what psoriasis is and they may want to know more about it.  If your teen feels more comfortable in covering their lesions, that’s his/her choice.  Most likely they will to avoid irritation of clothing rubbing against their skin, to avoid pus-seepage and blood on their clothes.  Work towards building their self-confidence to the point where they can learn to take risks and just focus on who they are as an individual.

    •    Help build your teen’s self-esteem.  Encourage your child to look at themselves as a whole person and not just focus on hidradenitis suppurativa.  That’s just one part of who they are. To help your child see the bigger picture, ask him/her to create a list of all the things they like about themselves and not to focus on one specific area.  This will help your child discover their own uniqueness, which may prompt them to expand beyond their comfort zone and inspire true confidence in who they see in the mirror. 

What happens when your child becomes a target for bullying?

Sometimes kids with hidradenitis suppurativa become a target for teasing simply because of being different.  This is wrong and is usually due to ignorance and a lack of understanding of the disease.  Providing education to classmates or friends may help.  However, if attempts to provide education fail, then other measures may need to be taken.

Signs of bullying:

    •    Withdrawing from life’s activities

    •    Avoidance of certain situations or social events or locker room shower and change of clothing

    •    Sudden loss of friends             

    •    Acting out

    •    Changes in eating habits (skipping meals or binging) or trouble sleeping

    •    Vague health complaints such as tummy troubles or headaches

    •    Loss of interest in school, missed school days and declining grades

    •    Self-destructive behaviors such as harming themselves or talking about suicide.

If your child is at this point, contact the National Suicide Prevention Lifeline or call 1-800-273-8255.

If some or all of the signs of bullying seem to fit your child, there are actions you can take:

Talk with your teen about the situation and how your teen could positively respond. Bullying can make a teen feel helpless and nervous about talking with an adult.  He/she fears retaliation or of being rejected by peers.  They don’t want to be seen as weak or as someone who tells on others.  Reassure your teen that it’s OK to ask for help and that bullying is not OK.  It’s also not OK to physically engage a bully. Someone could get hurt.  Encourage your teen to ignore the encounter when possible and ask for help.  Positive self-talk and confidence may actually cause the bully to ignore your teen.

If bullying is occurring at school, speak with your teen’s teacher, principal, coach or other adults involved in your teen’s life.  Present information about the disease to school staff and your teen’s classmates. The more they understand about the disease, the less likely they are to tease.  To request a school presentation, email [email protected] 

If your child is under 16, monitor their social media use.  Know their passwords and check to make sure they are not being bullied. Cyberbullying is very real and can be equally as harmful given the potential reach online.  Urge your child to always think before they post. You never know how far a post will travel and who will be reading it. It’s best to play it safe and not post anything that is hurtful or embarrassing.

Talk with a school counselor or seek professional help to work through the issues associated with bullying.  Unfortunately, bullying can increase your child’s stress level which makes hidradenitis suppurativa worse.  This in turn makes hidradenitis suppurativa more of a challenge to treat, which can then make the bullying worse.  Helping your child learn coping skills to address bullying will ultimately reduce your child’s stress and help the hidradenitis suppurativa.

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    Massachusetts Nonprofit Network
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    GuideStar