Coping with a cleft can be difficult. Every stage presents new challenges to overcome and new procedures to understand. Here are a few techniques I used for dealing with mine.
Coping with cleft treatment
For me, understanding my treatment and what was going to happen was paramount to helping me cope with what was happening. However, while we know everyone just wants ‘what’s best’ for us, it can be pretty daunting to get the answers we need by talking about something so complicated and personal in front of (essentially) a room full of very clever strangers. Although I established pretty strong relationships with my doctors, this took years to build by:
Remembering everyone is there for you I found that remembering that the people talking about my treatment options wanted me to understand what was going to happen and wanted me to feel reassured would often help me if I was feeling nervous.
Asking questions Although it was hard, remembering everyone wanted me to understand helped me ask any question, no matter how ‘silly’ I thought it sounded.
Making a note of questions Doing this meant I had plenty of time to work out what I wanted to find out about my current and next stages of treatment. It also empowered me in the appointment to show my doctors I'd come prepared. My notes would help me focus my words so I could say everything I was concerned about, since I could just read out my thoughts without muddling them up.
Taking notes before, during and after appointments Taking a notebook was really useful. It meant I had a permanent record of what had been said, meaning I could re-read my treatment plan to understand it in my own time.
Having someone with me I didn't always know what to say, I didn't always know what notes to make or what questions to ask. Attending my appointments with my mum or dad meant they could support me by helping me remember what had been said, taking notes for me or reminding me to think about what I wanted to find out before the appointment. I'd really recommend going with your parent/guardian/friend/someone you trust.
Being able to understand my treatment allowed me to make confident decisions about operations, and helped me feel in control, which made the whole process seem so much more manageable and a lot less scary.
Coping with the ‘down days’
Having a cleft really isn’t all about smiles, often it's about putting on a brave face, even when things are really tough. Sadly, some days something may trigger insecurities to come bubbling to the surface and you just can’t keep up the charade anymore.
On the odd occasion, I’d feel really down about my cleft, but I had several coping mechanisms to help me through it:
Talking to people Telling people about your cleft (when you’re ready to) is probably one of the best things to do. Your family will be there with you, but having a friend to moan/cry/laugh with is one of the best forms of treatment for getting through cleft. Having someone there to ‘let it all out to’ is invaluable – you might feel that no one can truly appreciate how you’re feeling at that moment (you may not even know yourself), but it's always helpful to talk about how you’re managing your cleft, rather than bottling everything up inside – there are always so many people to help you!
Letting yourself be upset I know this one might sound a little odd, but having a condition that often requires you to deal with so much more than your peers means you can get used to always just ‘getting on with it’. It’s easy to feel like there’s no point indulging in emotions on something you can’t fix straight away, or that you’re so used to carrying on that appreciating what you’ve been through feels a little alien to comprehend. Believe me, everyone deserves to feel a little self-pity sometimes. Yes, it doesn’t help to wallow in it, but it can often help you appreciate just how brave and special you are if you take the time to see how far you’ve come. I often felt bad about being upset about how unfair my situation sometimes seemed. I’d always think there are people who are going through something so much worse/bigger than this and that I had nothing to complain about. But as much as it’s great to have perspective, everyone is allowed to think how unfair things can be sometimes and it’s okay to get upset when things become too much.
Keeping things in perspective At the risk of sounding contradictory, this is also a really important one to remember. While it's helpful to let yourself realise the enormity of your treatment, which, to you, is a huge part of your life, everything is relative and it would often help to put my condition into perspective. When considering cleft is not life-threatening and doesn't particularly stop you physically doing anything, there's a lot to be thankful for. Having a cleft can also make you more grateful for the things you do have – a system of support to help you through your care, amazing professionals to carry out your treatment, people around you who love and support you…I could go on. The fact is, is that as bad as things might seem, it's always worth remembering how lucky we are.
Listening to music Personally, ‘Pretty Hurts’ by Beyoncé was always the best thing for me to hear when I was having a down day about my cleft – the raw emotion in the song and the feeling that you’re not alone when you’re feeling insecure really helped me let go of any anger or hurt I was feeling. Similarly, songs like ‘Unpretty’ by TLC, were great to really belt out and cry to. However, ‘Beautiful’ by Christina Aguilera, ‘Dog Days Are Over’ by Florence and the Machine, and ‘Born This Way’ by Lady Gaga are tough to beat when it comes to knowing that no matter how tough things can seem, you are so much stronger because of your differences, and they are what makes you beautiful and special. Even on the worst day, the uplifting beat of a great song can help you through the rubbish parts of cleft. You can check out my top 10 cleft anthems for more awesome song choices to get through cleft.
Talking to psychologists These professionals can often come with a side of stigma (although hopefully awareness about mental wellbeing is starting to change this). Talking to a team psychologist at the cleft clinic often helped me through tough times. The fact they know the procedures you’re going through is a massive help as it can be exhausting to repeat everything you’re going through to a family member. Although psychologists are there to help with anything, I found them especially helpful when I ran into a few technically complicated upsets. Although sometimes you can’t see a psychologist on the day you need to, I’ve had lots of helpful phone calls, and I’ve often written down how I 'm feeling so that when I next saw the team specialist, I could work through any issues I was having. Luckily this wasn’t too often, but it’s always a good reminder to know that with the specialities of cleft treatment, there are specialists to help you through every part of the journey.
Opening up to family and friends This is probably the most obvious, but also most important source of support I used to cope with treatment in general, but especially on my ‘down days’. My family has been so supportive. They'd always encourage me to push myself and do everything I would have done had I not been born with my cleft. As I got older, I had to make more of the decisions about my treatment, especially when it came to optional surgery. My family listened to the professionals’ information and they listened to my views to help me make the best decision based on what I wanted. They never imposed their views about surgery onto my decisions or questioned my judgements, but instead they helped me when things got tough and made things seem less scary (even when I’m sure they were worried themselves). My friends have always been very supportive too. Whilst I didn’t open up to many people about all the intricacies of living with a cleft, it was a great way to cope knowing I had friends who knew how I felt. I could just turn to them and cry or ask for an honest opinion about why someone had taken a triple glance in my direction. They knew it was important to encourage me and help me with my self-esteem, but they also made sure never to make a big deal of my cleft and let me bring it up if I needed. Having such supportive friends and family has definitely helped me to build my confidence and cope with my cleft.