Its only skin 2: Emotional wellbeing

With a skin condition much of the focus is on the physical aspects and the things you can actually see but we must not forget that mental health and emotional well-being is just as important and just because it is not visible, doesn’t make it any less of an issue. 

Something I have noticed from being a parent of a child with ichthyosis is that a lot of the medical care (actually all of it in our case) is focused on the physical aspects of ichthyosis.  No one really asks if Alfie is ok (in a non-physical sense).  Luckily we as parents keep a close eye on Alfies emotional well-being and would flag it up with our medical professionals if we thought there was an issue but I   wonder how much support there is available for older children/teenagers or adults who may struggle?

As parents of a child with ichthyosis we have found it really helpful to join the Ichthyosis Support Group and connect with other families.  Other families and people with ichthyosis can really understand what we as a family go through and what Alfie as an individual with ichthyosis goes through and the kind of support he/we need.  The fact that we have formed strong connections with other families and individuals means that hopefully in the future Alfie will also have someone he can talk to about things if he doesn’t want to talk to us, he will have people around him who will understand first hand.

Pre-school/school can be a hard time for so many children and I worry that having a visible condition could make things even harder for Alfie at some point in his life.  Children on one hand can be so innocent and may not even be aware of or care about any differences but others can be cruel (not always intentionally but even unintentional comments or actions can be hurtful).  Obviously staff at schools etc are trained to recognise signs of bullying or similar issues and would hopefully step in and make sure it was stopped early on but I feel that it is important that they also recognise that certain individuals can be an easy target because they stand out more than others for whatever reason.

As Alfie is 4, he is just starting to become aware that his skin is a little different from other children but it does not bother him and I hope that it stays that way.  When Alfie talks about his skin we try to have a conversation about everyone being different in lots of ways and that it doesn’t make anyone better or worse because of those differences.  In the same way that I hope others will be kind to Alfie, I hope that he will also be kind to others.  I hope that having ichthyosis will have a positive effect on my child and that it will mean that he can show empathy and kindness to others as we would expect people to be like that towards him.

I have heard many stories from adults who had a hard time at school and I will be honest, it scares me.  But I am also a fierce mama and I will always be in my sons corner even when he is grown up, not to fight his battles for him but to prepare him to fight them himself and to ensure that he is a strong character who is able to deal with what life throws at him (that goes for all aspects of life, not just when dealing with ‘skin stuff’) 

In the future I would like to see more emotional and mental health support coming in as part of the care for people with long term medical conditions, not just ichthyosis.  I think that this side of things is not talked about much, and is often ignored until it is staring you in the face or you go and ask for help.  Perhaps more support would help to catch issues earlier? 

I think my main point here though is that as parents we should not forget to consider emotional well-being as well as all the physical stuff, there is help and support out there if you need it, you just have to ask which is sometimes the hardest part.  And also, watch out for each other and be kind!!