Self-image and Society

Coping with staring and comments

If you have a visible difference, or if you sound different to others, chances are you’ve had to deal with people staring at you or making unwelcome comments. Most people will not do this in a hostile way, they will often just be curious, as you might be if you’d never met someone with a cleft before.

If you notice someone staring at you, the simplest way to deal with it is often to look back and smile. Chances are, they will just smile back and look away. If they don’t, you could raise your eyebrows to let them know for sure that you’ve noticed them.

If you do want to say something, keep your language non-confrontational and to-the-point. Simply asking ‘Yes?’ or saying ‘Hello’ will show that you’ve definitely noticed them looking, and hopefully they won’t continue. If you feel confident enough, you could try a more light-hearted response like “Oh no, do I have food in my teeth?” or “If you keep staring that hard, your eyes might get stuck that way!”

If someone asks you about your appearance, it’s a good idea to have some set responses or explanations ready. That way, you can confidently use different responses depending on the situation.

For example, you could say: “I was born with a cleft lip and I had surgery to repair it when I was a baby. I still have a scar, but it doesn’t bother me.”

You might not feel like talking about it, in which case it’s best to give a simple, direct response and then change the subject. Conversely, you may want to start a discussion by offering up more details, or asking if they know anyone else with a cleft. This shows you’re confident about your difference, and it can be a good chance to educate people so they don’t make the same mistake next time.

You may also find it helps to bring it up first to put people at ease or if they seem curious. Usually, if you can show that your difference doesn’t bother you, it won’t bother anyone else either. Simple explanations can work well here. For example, “I was born with a cleft palate so my speech isn’t always clear. Just ask me to repeat myself if you don’t understand something I say.”

Keep practicing these kinds of coping strategies and before long they will start to feel natural.

It’s also important to talk to family and friends about encounters that bother you, and be receptive to their support and advice. If you want to talk to someone else with a cleft, try our trained Peer Contacts or check out our Adults Facebook group.

“I started to test out different responses, and I have noticed that smiling is often an excellent way to make the awkward situation easier for both parties, although I think that it requires a deep breath and practice, as smiling may well be the last thing you feel like doing. “ – Amanda, adult with a cleft

“When people ask me about it I typically try to go into as much detail as possible – the surgeries, the feelings and the fascinating world of cleft palates. “ – Dan, adult with a cleft

“I actually feel quite good when people ask me about it. I am never asked off the bat though, and it always takes me to mention it before others feel comfortable asking about it. However, I feel informed enough to teach others about it and have always had a positive reaction from my imparting of knowledge. In my mind, it’s always preferable to talk about something like a cleft instead of ignoring it and having people silently question it.” – Oscar, adult with a cleft

Psychological Support

If you would like professional help to cope with feelings about your cleft or the reactions of others, you may be able to get support from the Clinical Psychologist with your Cleft Team.

This can include short sessions to develop strategies for coping and decision-making, as well as long-term therapy. The Clinical Psychologists attached to the Cleft Teams are specialists and can offer a range of talking therapies to help patients, parents and even families through any difficulties they may be having linked to cleft.

Common issues Clinical Psychologists deal with include:

  • how to answer other people’s questions and comments
  • appearance concerns
  • confidence and self-esteem
  • bullying and teasing
  • decision making and treatment planning
  • support around surgery
  • anxiety, worries, and low moods

Get a Referral

All Cleft Teams should have a Clinical Psychologist, though it may be that adult patients are only seen in local spoke clinics.

The kind of support you get will depend on your individual needs and circumstances. If you are not already under the care of a Cleft Team, you’ll need a referral from your GP before you can get talking therapy.

If you are under the care of a Cleft Team, call and ask to talk to the Clinical Psychologist. They will talk with you about your needs and decide with you what the best option is. This may be a face to face appointment or a referral to another service that can provide more appropriate and/or local support.

Bullying & Discrimination

Bullying is an unfortunate fact of life for many young people, especially those who are different in some way. What doesn’t get as much attention are those who never stop experiencing bullying and discrimination, even as adults. It may not even be something you’d think to call bullying, but if someone is deliberately made to feel bad about themselves through comments, rumours, exclusion or even physical contact like hitting and shoving, it still counts and it’s something that should be taken seriously. Even if the person at fault means well with their comments or questions, it can still be hurtful and shouldn’t be ignored.

Facing bullying as an adult can be devastating, and what can make it worse is that victims of adult bullying are often afraid to speak out for fear of ridicule or not being taken seriously.

You may wish to talk to other adults with a cleft in our Adult Voices Facebook group, or talk one-on-one to a Peer Contact.

Discrimination at Work

It is against the law to discriminate against anyone on the grounds of any ‘protected characteristic’ such as age, gender, sexuality, religion, disability, race, and so on.

‘Facial disfigurement’ became classed as a disability under the Disability Discrimination Act in 1995 and continues to be seen as such under the Equalities Act of 2010, and so to discriminate against someone based on a disfigurement would be against the law. Having a cleft may not be something you see as a disability or even a disfigurement (this is not a term CLAPA generally uses, but other charities like Changing Faces use it, partially because of its legally protected meaning), but if you believe someone is discriminating against you on the grounds of how your cleft makes you look, they may be breaking the law.

Each employer should have their own bullying and harassment policy which should be freely available. If not, ask your HR department.

In the Equality Act 2010, harassment is defined as “unwanted conduct related to a relevant protected characteristic, which has the purpose or effect of violating an individual’s dignity or creating and intimidating, hostile, degrading, humiliating or offensive environment for that individual.”

If you feel like this is happening to you, follow your employer’s bullying and harassment policy, or find help and advice on the following websites:

NHS Choices

Citizen’s Advice Bureau

Advisory, Conciliation and Arbitration Service (ACAS)

Changing Faces – What Success looks Like


 

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Published: November 2015

Next Review: February 2017

Source(s): Range of existing literature from CLAPA, including a leaflet produced by the Royal College of Surgeons in association with CLAPA. Various studies concerning the experiences of adults with a cleft were also used. Stories and suggestions from adults born with a cleft have been included throughout. Information from Changing Faces was also consulted. This information has been reviewed by cleft health professionals as well as CLAPA’s Adult Voices Council.

If you have a comment or question about the information in this page, or would like to know more about the sources of this information, please contact Communications & Information Manager Anna Martindale at [email protected] or 020 7833 4883.

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