Ichthyosis - Not just "skin deep"
Minding your mental health and positive coping
Ichthyosis can affect nearly every aspect of someone’s life. How much ichthyosis might affect you (or your child) depends on many things, including your access to a good medical team, how severe and/or visible it is, if you’ve found a skin care routine that helps to manage it, and your stage of life. The path forward isn’t always easy or clear, which can be worrying, but there is hope and ways to feel more in control of the disease.
Beyond the physical discomfort and limits, many people living with ichthyosis share the below experiences. While these experiences are challenging, it is possible to overcome them and emerge a stronger individual.
As children, many report they:
- Are teased, left out of activities (including recess and field days in
warmer temperatures), or made to feel different as children and adolescents - Have a hard time making and keeping friends
- Feel ashamed of their condition, especially when overheating precautions are necessary.
- Stress out at school about being touched, hiding their skin, or looking different.
As adults, many report they:
- Have concerns about dating and relationships and finding a life partner
- Feel financially strained, anxious about holding a job
- Face fears and uncertainty about the lack of treatments and how the condition might affect them over time
- Deal with embarrassment and shame over their appearance and skin shedding everywhere.
Read on to learn more and find strategies that can help.
The psychosocial side of ichthyosis and other skin conditions Research shows that, as with other rare and lifelong conditions, ichthyosis can take a toll on one’s emotional, psychological, social and spiritual health and wellbeing. And how it affects you often goes well beyond the physical look and feel of your skin.
Being able to tune into and understand how the condition might be affecting your mental, social and emotional health is an important part of managing the disease – as is finding ways to cope and knowing you’re not alone on this journey.
| It’s not easy living with a lifelong, rare skin condition, but many people who are affected lead happy, comfortable and productive lives. Talk with your care team about how the condition affects your day-to-day routine and mental health too. Explore our website for trusted information, tools for coping, as well as opportunities to connect with other people living with these conditions. |
It’s normal to feel a range of emotions – anger and denial to sadness, isolation and anxiety. Some studies show that one-third of people with ichthyosis have symptoms of depression and nearly all (95%) experience lessened quality of life. Patients with depression are three times more likely to not follow treatment plans compared with patients without depression, which can make their condition worse. Stress and anxiety can also make these skin conditions worse, triggering flare-ups and making it that much harder to follow skin care routines.
Bottom line: it’s vital to recognize, accept and talk about your feelings and reach out to other people who have ichthyosis. Many people say it’s also important not to dwell on the negative or how the condition is holding you back. Instead, try to look for ways to focus on the positive aspects of your life.
Psychosocial impact of ichthyosis
Having ichthyosis has been linked to:
- Poor self-esteem
- Feelings of embarrassment and shame
- Anxiety
- Depression
- Loneliness and withdrawing or isolating oneself from social situations, including sports and recreational activities
- Issues with body image, feeling self-conscious
- Reduced quality of life overall because of how the skin looks and the associated psychosocial distress
Many people – and especially kids and teenagers – with ichthyosis find themselves on the receiving end of bullying and teasing. Kids, especially, can be mean and, whether intentional or not, they often single people out who look or act different. Some may be scared that ichthyosis is contagious. Click here for strategies and resources to deal with bullying-type behavior.
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What is mental wellness? It’s just as important as your physical health. But what do we mean by your mental health? And we know people with chronic physical conditions are more likely to have anxiety or depression than people without chronic illness. |
Many people also express fears about making friends or attracting a partner. It’s not easy living with an outward-facing disease – as people tend to have first impressions or make up their minds about people just by looking at them.
Ichthyosis affects people in highly variable ways, and that is true for both skin and mental health. And symptoms change with different phases of life! If you have any of the above concerns, know that you are not alone. There is probably someone in the FIRST community who also had that same concern and has overcome it. Consider reviewing our Mental Health Resource Library, reaching out to the FIRST office, or our private Facebook Groups to get others' advice!
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