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Advice for Family & Friends

cleft lip and palate patient story and psychology - advice for friends and family

You don’t have to solve every problem

The challenges of a cleft lip and palate are often internal or a simple matter of patience. So it can often make someone feel helpless when they see a loved one who is upset without a quick method to reassure them. But (as hard as it might be), don’t feel too disheartened. Although reminding someone about the positives in their life and reassuring them that ‘it will all be worth it in the end’ (a phrase that may be practically ingrained on a cleft patient’s mind) can be good ways to help reassure someone living with a cleft, ultimately, being there, empathising with the infuriating parts of cleft treatment or simply listening can be just as (if not more) helpful. Being someone who really understands can make you feel more like a team mate, rather than someone who is trying (and failing) to solve impossible problems.

Learn how to support, don’t assume

Often being told ‘it’s worth the wait’ completely undermined what I was going through. It showed me that the person looking after me (whilst trying to be lovely) hadn’t listened to me, which would make me feel isolated. This is something that takes longer to learn, but is well worth doing so. Knowing what to say and when to say it is an incredible skill to have, and can make a massive difference in how well you can support someone going through a cleft. For me, it would really help when someone knew when to mention my cleft: asking me how an appointment had gone when I’d told a friend about it beforehand would make me feel cared for and listened to, but otherwise my friends and family would always wait for me to bring up my cleft which would help me to feel normal. My mum has recently told me she would often want to ask how I felt when going into a room of strangers, but held back on asking when I was younger because she didn’t want me to become self-conscious. Although I would often feel anxiety before meeting new people, I am so pleased she knew never to ask me this since it would only have confirmed my anxiety as a reality. Clearly, these ways of supporting me are unique to my personality and preferences, but I hope it shows that there are very different ways of helping someone through a cleft and it is worth taking the time to learn how to support properly, rather than wrongly assuming.

Stay positive

This can often be a very hard thing to do when a situation seems unsolvable. However, it is vital to continually remind someone with a cleft (or anyone for that matter) that they are valued and important. It can be great to refer to positive compliments other people have said, especially since we can start to overlook our true selves and the opinions of those we love to focus on a warped, negative perspective. It can be an amazing help to have someone we trust to remind us of who we really are, and it can be great to be reminded of the positives in our lives, particularly when we can seem stuck in a negative mind-set.

Help to keep a cleft in perspective

Having a cleft should not be a limiting condition. It is one that does present more challenges, but these only make someone stronger, kinder and more determined. It’s important to remember that others have faced far worse and succeeded, although this can sometimes be difficult to remember when undergoing extensive treatment or when self-confidence is low. As much as it is vital to sympathise when someone feels a situation is unfair (as it often can be), it is also very useful to remind someone about the positives in their life and of all the things they’ve accomplished (where they’ve been able to overcome their differences) and that their condition is not what defines them.

Be encouraging

Telling a child that they can be anything they want to be is an important part of any good childhood. However, this may be even more so the case with a child born with a cleft. The only time my parents mentioned my cleft was if I brought it up, or if I had an appointment coming up. I was never made to doubt my abilities because of my cleft, I was encouraged to go for my school plays, be part of public speaking roles and ask questions in class. It didn’t occur to me that I might be held back by my cleft until I was older, by which point I had the strong belief that I could do anything and had already done a lot of things I could be proud of. My anxiety was an internal conflict of my self-esteem, but I never thought for one moment that my parents/family/friends expected less of me because of my cleft. This silent belief of ‘normality’ gave me the confidence to not undermine myself externally since I never saw my cleft as a reason not to do something, since no one else saw it as a reason not to. Their quiet confidence in my abilities made me feel accepted and encouraged me to push myself (despite my internal struggles). I know if it had not been for their support (even when silent by not questioning my actions in regard to my cleft), I would not be the confident, self-assured person that I am today.


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