Many young people worry about telling their school, college or university about Huntington's disease.
You can find out how our Youth Engagement Service can support you if you need additional support or understanding while you (or your child) is in education.
One of the biggest reasons young people may avoid telling their school, college or university about Huntington’s disease is the fear that other people will see them differently. We advise that is best to not wait until you are completely overwhelmed. Speaking to someone earlier may make it easier to put support in place before missed work, stress or exhaustion begin to build up.
Below are some frequently asked questions regarding speaking to schools, colleges and universities about the impact of Huntington's disease.
Should I tell my school, college or university about Huntington’s disease?
Deciding whether to tell someone at school, college or university about Huntington’s disease can feel like a big step. You may worry that people will treat you differently, ask questions you are not ready to answer or make assumptions about what life is like for you and your family. There is no right or wrong decision. Some young people feel more supported once someone in education understands what is happening, while others prefer to keep their family circumstances private. What matters is that you feel in control of who knows and how much information you share.
You also do not have to tell everyone. You might decide to speak to one person you trust, such as a tutor, teacher, safeguarding lead, wellbeing adviser or member of the pastoral team. Having one person who understands your situation can give you somewhere to turn if life at home begins to affect your concentration, attendance, coursework or emotional wellbeing. You do not need to explain every detail about Huntington’s disease or your family. You might simply say that the condition affects someone close to you and that there may be times when you need additional understanding or support. You can also ask how your information will be stored, who it may be shared with and whether staff can speak to you before passing it on.
Whatever you choose, the decision should feel right for you. You can take your time, share only what feels comfortable and change your mind later. HDYES can help you think through your options and support you if you decide you would like to speak to your education provider.
Will everyone at my school / college / university have to know?
Telling your school, college or university about Huntington’s disease does not mean every teacher, lecturer or member of staff needs to know the details of your family’s situation. Many young people find it easier to choose one trusted person. This might be a form tutor, lecturer, safeguarding lead, wellbeing adviser, disability adviser or member of the pastoral team. That person can become your main point of contact. They may be able to help arrange support, explain your circumstances to other staff when necessary or give you somewhere to go if things feel difficult. Having one trusted person can also mean you do not have to repeat the same personal information repeatedly. You can discuss exactly what you are comfortable sharing and ask them to speak to you before passing anything on.
You are allowed to set boundaries. You might want staff to know that family circumstances could occasionally affect your education without sharing details about the person who has Huntington’s disease. You can also decide that certain information should only be shared when it is necessary. For example, another teacher may only need to know that you have approved support in place, rather than knowing your full family story.
Your experience belongs to you. Even when support is being arranged, you should remain involved in decisions about who knows what. Telling one person does not mean giving up your privacy. It can simply mean creating one safe point of contact for the times when you need support.
What kind of support will they offer me?
No two families affected by Huntington’s disease are the same. This means no two young people will need exactly the same support from their school, college or university. For one person, support may mean having a regular wellbeing check-in with someone they trust. Another person may need understanding around appointments, help catching up after an absence or flexibility following a particularly difficult period at home. You might benefit from having somewhere quiet to go when you feel overwhelmed. You may need a little extra time to complete work after a family emergency. Or you may simply want staff to understand why your concentration, attendance or energy levels sometimes change.
You do not need to know exactly what support you need before starting the conversation. It is okay to explain what you are finding difficult and work with staff to think about what might help. Your needs may also change over time. Support that works now may not be right next term or next year, particularly if circumstances within your family change. It is important that education professionals do not make assumptions. They should listen to you, involve you in decisions and understand that being affected by Huntington’s disease can look very different from one young person to another.
Good support should feel individual, flexible and respectful. It should help you take part in education without making you feel singled out or less capable. There is no perfect package of support. The right support is the support that makes education more manageable for you.
Are there any guides to explain what Huntington's is?
Talking about Huntington’s disease can be exhausting. You may already spend a lot of time answering questions, correcting misunderstandings or trying to explain symptoms that are complicated and different for every person. When you tell someone at school, college or university, you may feel pressure to suddenly become the expert. You might be asked what Huntington’s disease is, how it affects your family and what staff should do to support you. You are allowed to say that you do not know every answer. You are also allowed to say that some questions feel too personal.
The Huntington’s Disease Association has created a Teachers’ Guide to help education professionals understand the condition and how it can affect children and young people. Sharing the guide can give staff a trusted place to find information without putting all the responsibility on you. It may also help them understand that Huntington’s disease can affect a young person even when they do not have the condition themselves. A guide cannot describe every family, so you may still want to explain what your own experience is like. However, you should only have to share what is relevant and what feels comfortable.
You could say, “I find this difficult to explain, but there is a guide that will help you understand more.” Sometimes sharing a trusted resource is the easiest way to begin a conversation. You should not have to carry the responsibility of educating everyone around you.
Can HDYES help talk to schools, colleges and universities?
HDYES does not only provide support directly to young people. The service can also help education professionals understand Huntington’s disease and the impact it may have on a young person’s life. If you are worried about speaking to your school, college or university, you do not have to manage that conversation alone. A youth worker may be able to help you think about what you want to say, who you would feel comfortable speaking to and what kind of support might be useful. They can also help you prepare for the conversation. This might include writing down the key points you want to share, thinking about questions you may be asked or deciding what information you would prefer to keep private.
HDYES can provide information to education settings, answer questions and help staff understand how best to support young people affected by Huntington’s disease. This can be especially helpful when staff have never heard of the condition or do not understand how it can affect someone who does not have Huntington’s disease themselves. You should remain involved throughout the process. Support should be discussed with you, shaped around your circumstances and delivered in a way that respects your privacy. Sometimes having another person help explain the situation can make the first conversation feel much less daunting. You do not have to wait until something has gone wrong to contact HDYES. Support is available whenever you feel ready to talk.
What if I do not know what support I need?
It can be hard to ask for help when you do not know exactly what would make things better. You might know that you are tired, distracted or overwhelmed, but not know what to ask your school, college or university to do. Simply telling someone what you are finding difficult can be enough to start the conversation. You might say that things at home are affecting your concentration, that you are struggling to meet deadlines or that you feel anxious during the day because you are worried about a family member.
A trusted member of staff should listen to what you are experiencing and work with you to think about what might help. You should not be expected to solve everything by yourself. You might decide that regular check-ins would help. You may want understanding around appointments, somewhere quiet to go or support catching up after a difficult period. You may also find that your needs change. Something that helps now might not be right in six months, especially if circumstances at home change. You are allowed to try something and then say it is not working. Support should be flexible and should reflect what is happening in your life now. You know your own experience best. Your voice should be part of every decision about the support you receive.
I don't have Huntington’s disease; do I need support?
You may sometimes think, “I do not have Huntington’s disease, so why would I need support?” But living in a family affected by Huntington’s disease can still have a real impact on your life. You might be worried about someone you love, helping with tasks at home or noticing changes in a parent’s behaviour, movement or communication. You may also be living with uncertainty about your own future or feeling different from friends who do not have the same worries. All of this can follow you into school, college or university. You might find it difficult to concentrate, feel tired from helping at home or struggle emotionally after a difficult family situation. These challenges are real even if you do not have a diagnosis yourself.
You do not have to wait until things become unmanageable before asking for support. You are allowed to speak to someone because Huntington’s disease is affecting your wellbeing, your education or both. Your experience matters. You do not have to prove that things are “bad enough” before asking for help. Huntington’s disease affects whole families, and support should recognise that.
Will I get treated differently
One of the biggest reasons young people may avoid telling their school, college or university about Huntington’s disease is the fear that other people will see them differently. You might worry that teachers will feel sorry for you, lower their expectations or assume that you are not able to manage your studies. You may be concerned that staff will constantly ask how you are feeling, share information without your permission or treat every difficult day as though it is connected to Huntington’s disease.
These worries are understandable. Sharing your situation should not mean losing control of your own story. You should still be involved in deciding what is shared, who needs to know and what support would actually be helpful. Telling someone also does not mean that you are asking them to expect less from you. You may still want to be challenged, encouraged and supported to achieve your goals. You may simply need staff to understand that you are managing circumstances that other students may not be facing. Good support should help remove barriers, not change how people see your abilities. It could mean understanding around a family emergency, help catching up after an absence or having one trusted person to speak to when things feel difficult.
How HDYES can support you
Our Youth Engagement Service supports young people, parents and those that work closely with young people. If you would like to find out more about the work we do supporting children and young people, please visit the link below.