Friends, confidence and bullying

Practice scenario-based responses so that you have the words/actions necessary to stand up to bullying. Sometimes educating people about EB will encourage them to be more accepting of everyone's differences.

Know your resources and where you can get help. Ignoring bullying won’t make it go away. You need to tell someone about what is happening.

You could try the body language tool or download a mindfulness app to help reduce anxiety (e.g. Calm, Headspace).

Sometimes people can find it really hard to cope. You might need to get help if you are:

• Very unhappy or you don’t want to go anywhere or see anyone
• Not sleeping properly or having nightmares a lot
• Feeling like there is something wrong with you or worrying a lot about how you look

Don’t struggle on your own – tell your parents, carers or your teacher. Ask them to get in touch with your DEBRA EB Community Support Manager who will able to support you in finding the right help and support.

If the bullying is happening at school – talk to your parents or carers and your teacher. Your teacher may have no idea that you are being bullied, and the school will have an anti-bullying policy to tackle it.

Schools must also follow anti-discrimination law. This means staff must act to prevent discrimination, harassment and victimisation within the school. This applies to all schools in England and Wales and most schools in Scotland. Northern Ireland is mainly covered by the Disability Discrimination Act 1995; visit nidirect.gov.uk for more information.

If you feel you can’t speak to your teacher, maybe a friend can do it for you. You can also speak to a school counsellor, welfare officer, your EB nurse or your DEBRA EB Community Support Manager.

If the bullying is happening outside school – talk to your parents or carers, close relatives (such as grandparents or aunties and uncles) or even your friend’s parents. Youth workers and leaders may be able to help too.

If the bullying is happening online, tell a trusted adult – your parents, carers or a teacher. You can report abusive posts on Facebook and other social media platforms. You can also report abuse to Child Exploitation and Online Protection Centre (CEOP).

Keep reporting the bullying until it stops. It may not stop the first time you tell your parents or teacher and they try to stop it. If the bullying continues, tell them again.

Speak to your DEBRA EB Community Support Manger for 1:1 support and advice and for someone will be here to listen to your concerns. Your support manager can also:

• help with referrals and signposting to other services;
• assist with coming to schools, universities and places of work to educate others on living with EB; and
• put you in touch with others also living with EB through video calls and group chats.

If you're under 19 you can confidentially call, email or chat online about any problem big or small:

• Freephone 24h helpline: 0800 1111
• Website: www.childline.org.uk
• Sign up for a Childline account to message a counsellor anytime
• Chat 1:1 with an online advisor

If you're under 25 you can talk to The Mix for free on the phone, by email or on their webchat. You can also use their phone counselling service or get more information on support services you might need.

• Freephone: 0808 808 4994 (13:00-23:00 daily)
• Website: www.themix.org.uk

Contact the Support and Information Line to talk to someone for confidential support. This service is open to adults, children, parents and families Monday to Friday from 10am to 4pm.

• Phone for support information & advice: 0300 012 0275
• Website: www.changingfaces.org.uk
• Email: [email protected]

Student Space offers listening support, information and signposting services for students.

• Phone support: 0808 189 5260 (free, confidential advice line)
• Text support: text ‘STUDENT’ to 85258
• Website: www.studentspace.org.uk

When I started secondary school a lot of my friends didn’t move to the same school, so I felt very alone and scared. I didn’t want to go to school because I look different and have lots of blisters and scars and have to wear dressings.

The other girls in my class would be nasty to me and call me names. I felt embarrassed and sad as I didn’t want to be different. I told my Mum, who was sad for me, so she contacted DEBRA and spoke to my support manager for advice. She was very kind and helpful and talked to me about how she could help. She contacted my school and went to visit some of the teachers and staff to talk about my EB.

She left lots of leaflets and a poster. My teacher talked to my class about EB after this. Since then, I feel a lot happier and have made two really best friends who don’t care about my EB and that I have blisters.

– DEBRA Member

I would like to share with you what I went through whilst at primary school. I found this period of my life a challenging time, with not only fellow pupils making me feel as though I am ‘different’ due to the way that I look but assistant teachers that I worked closely with, too.

After speaking to the school about my concerns, I disappointingly did not receive adequate support and I wish that there were more resources available for people to understand my condition.

I have now moved onto high school and I am having a totally different, more positive experience and everyone is very nice to me.

– DEBRA Member

I have learnt throughout my life that EB doesn’t define me and I have achieved many things I am proud of during my 60 years, the best achievements being my 4 beautiful children.

My advice to anyone facing bullying of any form is that real friends will stick by you, your EB is only skin deep and throughout life people will get to know you for the person you are from within.

– DEBRA Member