Talking seems like such an easy thing to do. We talk to people every day (well, most of us do) and experience very little difficulty in speaking about a whole range of topics. However, talking about Huntington’s disease (HD) to our family and friends is something many of us seem to really struggle to do. There are reasons for why we find talking about HD challenging, which we shall explore in this section! But first, let’s think about why we should even bother talking about HD.

Why should we talk about HD?

Many young people may wonder why they should talk about HD at all. It’s not an easy subject to discuss with anybody, usually because you are talking about quite sensitive and personal feelings about how HD impacts on your life. It’s understandable that people would be hesitant to talk about HD so freely. So is there any reason why we should talk about HD? Well, yes, there is a very good reason: support. Young people in HD families experience many challenges which can be quite difficult to go through on your own. Being able to share these challenges and talk to someone about how you are feeling can be incredibly helpful in coping with the situation. Whereas trying to keep everything inside and not sharing your concerns can have the opposite effect and leave you feeling isolated and misunderstood.

“I tend not to talk to my parents, but I do talk to my boyfriend and friends. You most definitely need to talk about things, bottling it up doesn't help at all.” Amy

This is not just the case for HD, but for many things in life. Talking about your concerns or what impacts your life can often make you feel more able to cope with everything you’re dealing with. So who should you talk to? We’re not saying talk to everybody about HD, because you do not share all your concerns to everyone, you probably have people that you consider close to you who you would share things like HD impacting your life. Close family and friends would usually be the main people you would talk to about HD. Of course, HDYO is here to listen and answer any questions you may have too. But we would like you to have people nearby in your life who you know you can talk to as well.

What may make it difficult for you to talk about HD with family and friends?

At the beginning we said there may be some reasons for why talking about HD is not so easy, let’s take a look at some of the main reasons you may find it difficult to talk about HD. First, it’s important to remember that every situation is different. Each young person will experience their own unique situation with talking about HD to family and friends. We do not know your family and friends so our advice here is very general.

1. Finding it stressful to talk to family and friends

Perhaps the most obvious reason you may find it difficult to talk to family and friends about HD is because it causes you a lot of stress worrying about what to say to them? How will people react to what you tell them? Will friends understand? Will family understand what you are feeling? You might even be afraid that you will upset someone if you mention HD – this may particularly be the case with family members. These are all valid and very common concerns for young people to have and actually, it is good that you are thinking about all these possible outcomes, it shows that you are aware of the people around you and how they may react. We will explore this in some of our tips for talking about HD later in the section.

2. HD is not discussed in your home

You may be one of the many young people in a family where HD is not discussed openly, despite HD being a big part of your lives. Many families find it difficult to talk openly about HD, and when it isn’t discussed at all this makes it much more difficult for you to ask questions or raise concerns you have about HD with your family.

“My family don't really talk about HD.” Vicky

This can be a difficult situation because you might want to talk to your family but they may not seem open to doing so. But it would be wrong to assume that people don’t want to talk about HD. It may be that, if the topic was brought up, they would happily discuss HD with you. Often families get stuck in this situation of not talking about the one thing that impacts them all: HD. But they may want to talk about it. In this situation it is a good idea to try and start a discussion about HD in some form (see the tips below for some ideas on how to do this).

3. My family feel guilty that I have to face HD

Another situation that may make it difficult to talk about HD with your family is when some members of the family feel an overwhelming sense of guilt for thinking that it is their fault you have to face the challenges HD brings with it in life.

“It's difficult talking to my mom (who has HD) as she feels completely guilty, and all she ever said when I had my result was sorry.” Jason

Guilt can be a difficult emotion for a family member to get past. In this kind of situation the good thing is that the issue is probably not that the person does not want to talk about HD with you, but more that they feel guilty you have to deal with HD in your life. It may be a good tactic, before talking about HD and your questions or concerns, talk to them about the guilt they feel and let them know it is not their fault and it is better if we face this together so we can support each other.

4. My family member denies that they have HD

Some of you may be in a situation where the person in your family who has HD is in denial that they have the condition.

“The hardest thing I have experienced so far is confronting my mum about her behaviour and denial that she is demonstrating signs and symptoms. She even lies to us about her doctor’s appointments. I have confronted her about this but we end up arguing. I feel as though I cannot talk to her about HD at all.” Julie

Denial is something many people do at some point in their lives (like denying you are a fan of a particular football team because they are performing badly). This kind of denial can be reasoned with, but unfortunately some people with HD can experience something which looks like denial but is in fact called Anosognosia, which is a medical term for lack of knowing. In many cases people with Anosognosia cannot be reasoned with or made to “see” their illness as they are completely unaware that they have HD, which makes talking about it with them tricky! This does not help you to deal with your own questions and concerns about HD but it may help you understand why someone with HD behaves as if they don’t have the condition. In this situation it may be a good option to try and find someone else to talk to about HD, someone you trust, because it’s important to find someone that you can talk about HD openly with. If there’s nobody you can talk to near you, remember, we are always here to listen and understand.

5. You know about HD, but your family don’t know you know…

It is not uncommon for a young person to find themselves in a situation where they know someone in their family has HD, but your family have decided not to tell you yet, so they do not know that you know (if that makes sense). This certainly happens in many families. You may have overheard someone talking about HD in the family or seen some post that talks about HD appointments, or maybe you did the research yourself and figured out what was wrong. Either way you now find yourself in a situation where you know something important that the family has tried to keep from you for whatever reason. Remember, many families do not find it easy to talk about HD and this may be the main reason they have not told you about HD yet – they simply don’t know how to bring it up. The first thing to do is to be sure that it is HD, could there be another explanation? If you are sure it is HD that is not being mentioned with you then you may want to try and make your family aware that you have found this news out. It is really important to think about what could happen if you tell your family you know about HD. If you’re concerned with how that could play out then speak to HDYO first and we can go through everything with you and discuss the best approach. But the main thing is to find ways to let them know you know. You may find some of the tips below helpful.

HDYO’s tips for talking about HD with family and friends

Here are some of our top tips for talking to family and friends about HD. Remember that each person has a different situation, so these are some general tips that hopefully will be helpful for you in your situation.

• You are in control – with friends and family, you decide who you are going to talk to, you have that control over the situation, you can select who you want to talk to about HD. You don’t have to tell everybody, remember! Just those you want to tell - those you trust and are comfortable with telling them about HD.
• Think about what could happen – before you tell someone about HD in your life, think about how that person may react, will they listen to you, will they understand and can you trust them? If you know this person well you may have a good idea of how that person will react when you tell them about HD. If you’re not sure how someone will react or if they will be supportive, perhaps you could think if there is anyone else you could talk to first that may be more supportive?
• Find the right time to talk to the person – Just as important as what you want to say is finding the right time to talk to the person about HD. If they are busy or not focused, then that may not be a good time to start a conversation about HD with them. When do they have some time to talk alone? Find out and plan to speak with them then.
• What are you hoping will happen? – think about exactly what you are trying to achieve by speaking about HD to this person. What do you hope to happen? Be clear in your own mind about this before you start talking to someone about HD.
• Practice makes perfect – rehearse what you want to say before you tell the person, so that you are happy with what you plan to say and how you want to say it. This will give you some confidence when you talk about HD to that person as you will know what you want to say. You could practice in front of a mirror if that helps or contact HDYO and we will happily practice the conversation with you.
• Know your stuff – Do you know enough about HD to explain what it is to someone if they are not aware of it? Most friends won’t have any idea what HD is so you will have to explain HD simply to them. The better the friends understand HD the more they will be able to understand how HD impacts on your life and can be more supportive for you. Don’t worry, HDYO has some great educational materials to help explain HD (including this what is HD? brochure you can order for free). It’s easy to read, bright and should help your friends get a basic understanding of HD quickly!
• Plan your approach – You don’t have to talk to someone about HD, why not write them a letter? Or email? Or text? There are many ways to communicate and you can think about which way would be best for you and who you want to tell. Sometimes, if it’s personal things you want to express, a letter can be a great way to get your family to listen to you. Whereas you may prefer to speak via text with a friend.

Young people from other families affected by Huntington’s disease

It may be that you don’t want to talk about Huntington’s disease with any of your friends or family, if that’s the case then that’s perfectly ok. But having people to talk to about Huntington’s disease and how it affects you can be very comforting, and you may find it rewarding to talk to other young people who come from families affected by Huntington’s disease. These are young people who are going through similar experiences and might be worried about the same issues as you. It can often be a relief to talk to people who completely understand, without you having to explain anything about the disease.

‘I don’t talk to my friends about Huntington’s disease because I just can’t bring myself to do it. But being able to talk with others a similar age to me who are going through the same thing is a big help to me.’ Michael

Talking to young people from families like your own can really be a great support system for all involved. HDYO is always keen to connect young people from families impacted by Huntington’s disease and we have a page on Facebook and Facebook Group, where you can interact with others in similar situations to yourself. It is also worth contacting your national Huntington’s disease organisation as they may be able to provide contact with other young people in your area, or they may have youth camps and events for young people to meet at.

Talking about HD with family and friends can be challenging, but the benefits of having people around you who you can talk to when you have questions, concerns or you simply want to share your frustrations with can be very helpful and allow you to cope with what’s going on in your life. It’s important to note that sometimes we (young people) are just not ready to talk about HD and that is fine, but know if you ever want to talk about how things are for you, HDYO is always here to answer any questions, concerns or listen to what you’ve got to say. Just contact us anytime.