EB Support: Overcoming Bullying and Building Community
This page includes practical and emotional guidance, as well as information on different support resources and services, if you’re struggling with confidence issues or overcoming bullying as someone living with epidermolysis bullosa (EB).
Dealing with confidence issues or bullying is hard for anyone to go through, and we know that living with epidermolysis bullosa (EB) can lead to more of these challenges. But if you’re struggling with confidence or overcoming bullying and you need support, we’re here for you.
We’re only a call away from Monday to Friday 9am-5pm on 01344 771961 (option 1). Outside of these hours you can email us at communitysupport@debra.org.uk or leave a message and we will get back to you as soon as possible. We’re here to provide a listening ear and emotional support when you need it most, signpost you to other helpful organisations and resources, and help however we can.
There’s a wide range of other resources and guidance available to support you that are covered in the following sections, and you can join our member events and try other opportunities to connect with other people living with EB.
Contents
- Feeling different to other people. Guidance on how to handle feeling different to others because of your EB.
- Making friends and fitting in at school with EB. Guidance on fitting in with others and ways to feeling empowered to talk about your EB.
- If you are being bullied. What you can do if you’re being bullied either in or out of school, and different places you can find support.
- Connecting with other members of the EB community. Information about the different ways you can connect with other people living with EB in the UK, both online and in person.
- Helplines and other support services. Information on a variety of helplines and charities who can offer support, from free 24/7 phone support to counselling services.
- Stories from the EB community. Stories from our other members about their experiences living with EB, and how you can share your story if you’d like to.
Feeling different to other people
Living with EB is not always easy and might mean you feel different to other people or that you cannot do all the things your friends can do. Although you might look different to your friends and family, remember that everyone is different. One of the best things about people is that no two of us are the same. EB doesn’t need to be the focus of your identity. Exploring your strengths can encourage you to feel more well-rounded and confident.
We are all unique. No one is perfect
Sometimes worrying about how you look or how other people might act can affect how you feel about yourself. It can hurt your confidence and make you feel more embarrassed, shy, or anxious when you meet others. You might even avoid seeing new people if you’re worried they will stare, say mean things to you, or not understand why you can’t join in with some activities.
Everyone has their own differences or things they don’t like about themselves, though. These might be scars or blisters, birthmarks, or wearing bandages or dressings, having one leg shorter than the other. We all feel self-conscious at times and worry about how we look. If you find yourself low on confidence or anxious when meeting others, they may be feeling the same way too. And although you and your friends and family are not all alike, you may like and enjoy a lot of the same things.
You might find that looking different isn’t easy sometimes, but it’s completely normal to have good days and bad days. EB poses challenges that your peers may not face, but there are some tips and resources that can help you to deal with these like those mentioned in the sections below. Remember, it’s OK to not be OK. Sometimes we just need some space, and sometimes we need to ask for help to deal with our feelings.
Making friends and fitting in at school with EB
We know that fitting in with EB, at school or anywhere else, can be difficult. Getting to know one another and making friends at school starts with looking and being looked at. Curiosity and looking is natural when someone new arrives; we look more and for longer when someone’s appearance is different or unfamiliar.
The other children at your nursery or school are likely to look carefully, perhaps with surprise and interest at you. Some younger children may be curious as to why you wear bandages, have blisters or scars, use a wheelchair, or are unable to wear the same school uniform as them. Others may ask a question, or they might look away because they are not sure how to respond. It is important to understand from a young age that if a small child is staring or asking a question, they are most likely not being rude but are just being curious.
It may take time, but you should feel empowered to talk about your EB. It can be helpful to think about what you may say if someone is staring or if they ask what is wrong with your skin. For example, “I was born with it.”
Debra the Zebra’s Birthday Party
Our Debra the Zebra book is aimed at children aged 2-7 to help raise awareness of EB through a story, which could be shared with families, playgroups, and at school. You can read Debra the Zebra online or get in touch with us at membership@debra.org.uk if you’d like us to send you a printed copy.
Guardians of EverBright EB comic
Developed with significant input from DEBRA members, this brand-new comic is aimed at children and early teens. The comic is intended to be both an enjoyable stand-alone read but also a resource to help raise vital awareness and understanding of EB, particularly within schools.
Guardians of EverBright is a tale of adventure, friendship, and the power of the human spirit. Join our heroes representing the EB community as they head on an epic quest!
The comic is currently available exclusively for DEBRA members for free. We have a limited number of copies, so if you’d like to request a copy, please complete our interest form. If you’d like to make a donation to contribute towards the production of the comic and postage costs, we would really appreciate it.
Life of Layton
Our Life of Layton animation is another good way of showing others what it’s like to live with EB and illustrate what some of the symptoms can be like.
“I have EB” cards
We also have wallet-sized cards for every EB type that you can keep with you, so you have something to show others to briefly explain your EB type.
What to do if you’re being bullied
According to the Government website, most people define bullying as behaviour by an individual or group, repeated over time, which is intended to hurt another individual or group either physically or emotionally.
If you are struggling with bullying, harassment, cyberbullying online or through social media, or anti-social behaviour issues related to EB, we hope the resource here will enable you to find solutions and practical help.
One thing that can help with overcoming bullying when you have EB is practicing 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.
Think about 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 to get the help you need. The best people to tell may vary depending on whether you’re being bullied in school or out of school, so please see our suggestions in the following sections.
There are also resources to help your mental wellbeing and confidence. You could try the Changing Faces body language tool or download a mindfulness app to help reduce anxiety such as Calm or Headspace.
You can also find more support to help you with your emotional wellbeing on our website.
Sometimes people can find it really hard to cope. Please speak to someone and ask for help if you are:
- Very unhappy or you don’t want to go anywhere or see anyone.
- Not sleeping properly or having frequent nightmares.
- 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.
You can also ask them to get in touch with your DEBRA UK EB Community Support Manager who will always help you with finding the right support.
There are also a number of helplines and services that you can use, from 24/7 phone support to online chat services, if you’d like someone else to talk to about what you’re going through.
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 if they know about what you’re dealing with.
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. You can visit the nidirect website for more information on diversity and discrimination.
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 UK EB Community Support Manager. Our EB Community Support Managers could even help by coming into your school to educate others on EB and advocate for your needs.
If the bullying is happening outside of school, talk to your parents or carers, close relatives (such as grandparents or aunties and uncles), or even your friends’ parents. Youth workers may be able to help too.
If the bullying is happening online, tell a trusted adult like your parents, carers, or a teacher. You can report abusive posts on Facebook and other social media platforms. You can also report abuse to the Child Exploitation and Online Protection Centre (CEOP).
Keep reporting the bullying until it stops. It may not stop the first time you tell someone and they try to stop it, but it’s always best to tell them again if the bullying continues.
Bullying can be considered a hate crime, and attacks against disabled people are considered as a Disability Hate Crime (DHC). To learn more about what is considered as a hate crime, DHCs, and how to report them, please visit the Stop Disability Hate Crime page by Disability Rights UK.
Connecting with other members of the EB community
Connecting with others who may share similar experiences can be a good way to help increase confidence and learn about how to deal with bullying when you have EB. There are loads of ways to connect with other DEBRA UK members and engage with the EB community, from our online events to in-person events like our annual Members’ Weekend.
Our regular online events include Parent Pitstops, where parents and carers can meet other members and share tips and experiences with each other. We also host online events like quizzes, so whether you want to enjoy an activity or just chat with others, we have different options for you.
You can also join EB Connect, a free, private, online social platform where members of the EB community from the UK and all around the world can connect.
This is a space for you. It’s a platform where you can share experiences, make friends, have a chat, or use the interactive map to find others living with EB.
EB Connect is open to anyone affected by EB, with groups for all types of EB, and different age groups. There’s also a page dedicated to DEBRA UK, which is the best group for you to get in touch with the EB community in the UK.
Helplines and other support services
There’s a wide range of support available if you’re struggling with bullying and need some help, along with the emotional wellbeing resources mentioned above. Whether you’d prefer to receive support through an online chat or texting, or speak to someone on the phone at any time, there’s a variety of resources and charities below that are here to help you. Please do speak to someone if you’re having a hard time.
In an emergency, go to your local Accident & Emergency (A&E) department or call 999 for an ambulance.
If it’s less urgent but you need healthcare information, call the NHS 111 service.
You can always speak to your DEBRA UK EB Community Support Manager for 1:1 support and advice and for someone will be here to listen to your concerns. Your EB Community Support Manager can also:
- help with referrals and signpost you to other services;
- assist with coming to schools, universities, and places of work to educate others on living with EB and advocate for your needs; and
- put you in touch with others living with EB through video calls and group chats.
You can contact the Changing Faces Support and Information Line to talk to someone for confidential support. This service is open Monday to Friday from 10am to 4pm. It’s available to anyone over the age of 16 who has concerns about a visible difference, whether it applies to you, a friend, or a family member. If you are under 16, Changing Faces will just need to speak to a parent or guardian first.
You can call them on 0300 012 0275, or email at info@changingfaces.org.uk
If you’re 18 and under you can confidentially call, email or chat online with Childline about any problem, big or small. You can get their support through:
- The freephone 24/7 helpline on 0800 1111.
- Signing up for a Childline account to message a counsellor anytime.
- Chatting 1:1 with an online advisor.
If you’re under 25, you can talk to The Mix for free support. You can also use their phone counselling service or get more information on support services you might need. The Mix offers support through their:
- Freephone on 0808 808 4994 (13:00-23:00 daily)
- Free 24/7 Crisis Messenger text service.
- Email.
- One-to-one chat, which is open Monday to Friday from 4pm to 11pm.
- Counselling service, if you’re looking for short-term help with your mental health and emotional wellbeing. The Mix will usually offer up to eight counselling sessions that last around 50 minutes each.
Student Space offers listening support, information, and signposting services for students. They offer phone and text support:
- Phone support: 0808 189 5260 – a free, confidential advice line.
- Text support: text ‘STUDENT’ to 85258.
Whatever worries or troubles you’re having, you can call Samaritans, for free, 24/7. You can call them on 116 123 for support, or find your nearest Samaritans branch if you’d rather meet someone face-to-face.
We’ve partnered with an award-winning mental health service called Togetherall, where you can anonymously share experiences and find resources to support mental health and wellbeing. It offers 24/7 anonymous peer and community support, with trained clinicians online at all times. Togetherall is available free for all DEBRA members.
For a full list of education resources, please visit our resources and toolkit page.
Stories from the EB Community
We have a whole collection of stories from our members on our EB Stories blog, from people with different experiences, ages, backgrounds, and EB types.
We’d love to hear about your stories and tips for dealing with others who are not being kind, so we can share them to help others with EB who may be struggling with bullying. If you’d be interested in sharing your story and writing a blog, please get in touch with us at membership@debra.org.uk
Page published: October 2024
Last review date: March 2025
Next review date: March 2026