Mental Health
Don’t forget to check out FIRST’s private Facebook group for parents for ideas and support. In Facebook, search for “FIRST Ichthyosis” and all of FIRST’s private Facebook groups will come up. Request to join the group(s) that you qualify for.
At this phase, meeting affected adults at FIRST conferences and one day meet-ups can also be helpful for practical advice and serve as a powerful visual of what lies ahead.
Ichthyosis – Not Just “Skin Deep”
Research shows that ichthyosis can take a toll on one’s emotional, psychological, social and spiritual health and wellbeing. Being able to tune into and understand how the condition might be affecting you 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 OK to have big emotions – fear, guilt, anger, and anxiety about the future. Use these skills to help prevent them from taking over and interfering with your ability to move forward.
Assessing Your Mental Health & Questions to Ask
There are different ways of dealing with the stress and uncertainty of a rare skin condition. Learn about positive and negative ways of dealing with stress and some coping skills you can use to minimize the impact ichthyosis has on you, or your child’s, daily life.
This section lists numerous resources that you can use while navigating life with Ichthyosis. Some are intended for adults and a section for helping children work through mental health issues is also included.
Check out an article from one of our members, Mikela, who is helping FIRST gather mental health resources and is sharing some of what she has gone through with the hopes that it could possibly help others.
Read another article from Mikela about mindfulness. Learn how she regularly uses it as a technique to help when she is feeling stressed or anxious.
Why We Need More Research Into Mental Health’s Impact
The people affected by rare and complex diseases are a small, often forgotten group. However, things change for them irrevocably when they are diagnosed with a rare disease. Currently, because of a general lack of knowledge about ichthyosis in the medical community, this is more often than not a negative experience. More research could help turn this around and create more positive experiences.
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