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Living with psoriasis and/or psoriatic arthritis creates a mixed bag of emotions that affect not only your child but the whole family. Knowing what types of emotions to expect and how to support your child will help you and your family successfully navigate the emotional impact associated with living with psoriatic disease.
The emotional impact of psoriatic disease
Not only does psoriasis and/or psoriatic arthritis affect a child or 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 children, having psoriasis has little impact or emotional response. For others, it can have a huge effect on a child’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 psoriatic disease.
Psoriatic disease presents emotional responses that ebb and flow with flares of the disease:
Embarrassment Anger Envy or jealousy Happy
Fear Loneliness Introversion 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 psoriatic 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 psoriasis 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 psoriasis is just like having blue eyes or 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 children 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 child covering up his/her psoriasis. Encouraging your child to cover up may make them feel like they are different and you are embarrassed by their disease. Let your child 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 child feels more comfortable in covering their scales, that’s his/her choice. 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 child’s self-esteem. Encourage your child to look at themselves as a whole person and not just focus on psoriasis or psoriatic arthritis. 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 psoriasis and/or psoriatic arthritis 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
- 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 child about the situation and how your child could positively respond. Bullying can make a child 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 child 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 child to ignore the encounter when possible and ask for help. Positive self-talk and confidence may actually cause the bully to ignore your child.
If bullying is occurring at school, speak with your child’s teacher, principal, coach or other adults involved in your child’s life. Present information about the disease to school staff and your child’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 psoriasis worse. This in turn makes psoriasis 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 psoriasis.
Know the signs of depression and what to do
Sometimes being bullied or diagnosed with psoriatic disease can lead to depression. People with psoriatic disease are at higher risk for developing depression. Kids can become depressed, just like adults. It’s important as a parent to recognize the signs and obtain help for your child. Depression in youth is often undiagnosed because it is seen as a normal emotional and psychological change associated with growth. Your child won’t recognize the symptoms and will more than likely slide into feelings of isolation. Here are some specific signs to watch for:
- Irritability or anger, especially if focused on any individual
- Continuous feelings of sadness and hopelessness
- Social withdrawal (such as persistently remaining in his/her room for weeks)
- Increased sensitivity to rejection
- Changes in appetite – either increased or decreased
- Changes in sleep – sleeplessness or excessive sleep
- Vocal outburst or crying
- Difficulty concentrating
- Fatigue and low energy
- Physical complaints that don’t respond to treatment (i.e. stomachache or headache)
- Reduced ability function/loss of interest in school, hobbies, family and friends
- Poor academic performance and avoids going to school
- Impaired thinking or concentration
Not all children will have all of these symptoms. They may have some of the symptoms at different times and in different settings. They may feel depressed for a few days or a couple of weeks, which is normal. However, if the symptoms above last for more than a couple of weeks, it’s time to seek help.
Talk with your child’s teacher to see if they’ve noticed a change in behavior. Find a mental health care professional who can help diagnose the depression and offer treatment options to help your child feel less frustrated and return to an emotionally healthy life.
Find a psychologist or counselor: American Psychological Association.
Deal with your own emotions
Sometimes the biggest hurdle in dealing with your child’s psoriatic disease is your own emotions about the diagnosis. You could be feeling a sense of guilt or anger, fear of complications, or what this means for your child’s future. These are valid feelings, but it’s the perspective you bring to each that can make a difference for how you, your child and family cope.
Here are some of the best tips from families that successfully cope with psoriatic disease:
- Don’t focus on the what-ifs or the might-have-beens. Focus on what you can do today and in the future to keep your child as healthy and happy as possible.
- Learn to divide tasks to avoid placing more of the care of your child on any one person. Take turns going to the doctor for appointments or involve siblings in tasks. There’s also no reason why your child can’t sleep over at a friend’s house or stay with grandparents for the weekend.
- Don’t lose sight of your own needs by making psoriasis or psoriatic arthritis the focus of your relationships. Maintain meaningful relationships with other adults, family and friends. To be strong for your child, you must have a strong inner self. Take care of yourself before you start to feel resentment and anger.
- Learn to accept the diagnosis. Move on. This could take weeks, months or years. Your own attitude can affect your child if they sense frustration, negative thoughts or guilt. Your child might feel he/she is to blame for your feelings. Recognizing that you can meet life’s challenges will help make moving past the diagnosis easier.
- Remember – You’re not alone! If you need help, sign up to be matched with other parents who understand what you’re going through via NPF’s One to One Program or contact the Foundation’s Patient Navigation Center at 800-723-9166. If you’d like to speak with a psychologist or counselor, contact the American Psychological Association. It’s OK to ask for help!
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