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Huntington's Disease Youth Organization

Relationships

HDYO has more information about HD available for young people, parents and professionals on our site:

www.hdyo.org

Relationships can play an important role in coping with Huntington’s disease. Having the support of a partner or close friends can be very helpful, often providing a much needed shoulder to lean on. Sometimes getting involved and progressing in relationships can be a difficult process for those in a family affected by Huntington’s disease.

Worry

Young people with Huntington’s disease in the family may have a lot of worries about forming relationships, especially with a potential partner. They may worry about if they will develop the illness, about having children or getting married. People might worry about becoming a burden to their partner at some stage in the future. These worries can sometimes be enough to make young people think that they are not going to find love (or should not even bother looking), because Huntington’s disease is in their lives. These are all very common feelings within families affected by Huntington’s disease, and make forming a relationship that extra bit harder than it usually is.

When to bring up Huntington’s disease with a potential partner?

One of the first, and possibly biggest issues, (young) people in families affected by Huntington’s disease have, when forming a relationship with somebody, is when to tell them about the disease. It is incredibly hard and even rather daunting to decide when is the best time to tell someone about Huntington’s disease.

Walking

Never telling a partner about Huntington’s disease in your family is probably not the right answer. Not mentioning Huntington’s disease to your partner may make you feel guilty and cause added complications as the relationship progresses, and may also leave you unable to talk to your partner about your feelings. When actually, talking about the disease - sharing that information - can bring people closer together, help you cope better, and provide another perspective. Keeping the disease hidden tends not to solve anything, and it can be hard work keeping secrets.

At the same time, telling a potential partner straight away (on a first date for instance) leaves no time to get to know each other, and puts a potential obstacle upfront in the relationship before you’ve even started. It’s important to consider that Huntington’s disease is not your whole life and it does not define who you are. Relationships are about getting to know each other as individuals. Give yourself time to get to know people before you bring up Huntington’s disease and how it affects your life. Get to know each other first and then tell them when you feel it is right.

‘When I met Zack and had such strong feelings towards him, the thought of telling him about Huntington’s disease was terrifying. I didn’t want to lose what we were starting to develop and I didn’t want him to think of me differently - I was scared. It took me a few months to actually bring it up with him, but when I did, nothing changed in our relationship. Zack is so kind, loving and understanding that when I told him about Huntington’s disease, it wasn’t a deal breaker at all.’ Penelope

The fact is there’s no perfect formula for when to tell someone you like about Huntington’s disease. But it is clear that you must tell them at some point, and perhaps the best period is after the ‘getting to know each other’ phase and before the relationship becomes too serious. Leaving it too long to tell someone close to you about Huntington’s disease can also lead to complications such as your partner learning about the condition from someone else. This can result in a lack of trust in the relationship and feelings of resentment from the partner because important information wasn’t shared with them.

It’s also important that when you do decide to tell someone about Huntington’s disease in your family, that you do so honestly and positively. Telling a person half the story isn’t enough, if you’re going to tell them, tell them properly. Be truthful but also be positive in your manner, the disease being in your life is nothing to be ashamed of. Speak confidently about it; show you aren’t afraid to discuss Huntington’s disease and that it is merely one part of your life.

Commitment

Commitment can become a real issue for some people from a family affected by Huntington’s disease. It is not that people don’t want to commit, quite the opposite, people do (usually). As the relationship gets more serious, so do the worries over having children and potentially becoming a burden to your partner in the future. Some may start to question whether they should get involved in a serious relationship with the risk of Huntington’s disease hanging over them. People can care so much about their partner that they feel the best thing to do is not commit to them, because they want to save their partner from all the stress, hardship and difficulties Huntington’s disease can bring with it, along with the possibility of having their partner care for them in future years.

‘Mark has only once tried to give me a chance to walk away from Huntington’s disease and the possible future it may give us. One night the week before the wedding he sat me down and asked if I was really sure I wanted to marry him. If he has inherited the disease our future would be full of hardship and added stress that he feels I shouldn’t have to live with. Naturally I said yes, I was sure. I didn’t feel there was a choice to make. I love him and that is more important than any stupid disease…’ Harriet

Marriage

Young people can feel really guilty for wanting a serious relationship with someone, knowing that they have Huntington’s disease in the family. It can be difficult to get past that guilt or worry and just let yourself be happy.

‘As much as I loved my partner, I could not bring myself to ask for her hand in marriage. I could not ask her to take on such a potential burden, I loved her too much. In the end my partner asked ME to marry her and although I still felt guilty, I allowed myself that happiness and said yes.’ Craig

Marriage is a huge commitment, a lifelong commitment. The words ‘In sickness and in health’ have a lot more meaning to them when you have the risk of Huntington’s disease in your life. Not just for the person from the family with Huntington’s disease, but for the partner who is coming into that family knowing the potential issues that could be ahead.

Planning your life together

As a relationship becomes ‘serious’ there are more challenging topics to discuss. Aside from marriage, the main two topics are often genetic testing and having children.

Genetic Testing

Each young person’s genetic status will vary but a lot of young people in relationships will likely still be at risk of HD, some of you may have tested positive or negative by this point and gone through the process, but most young people will still be at risk and will be faced with the decision of whether the get tested or not. If you are in a serious relationship then this topic will be likely as important to you as it is to your partner, who may be concerned about your future. Knowing your gene status can influence the way you approach life but it will also impact on your partner, so any decisions around genetic testing should be discussed with your partner openly so you can share thoughts and concerns. Genetic testing is a big step for anybody at risk for HD, and completely your decision to make, nobody else has a say in whether you should get tested or not. But your partner should be aware of your decision and thought process, and hopefully supportive of your choice. The testing process is often an emotional roller coaster and we highly recommend taking a supportive other along to your appointments or test results. A partner can be a great support person during this time.

Having children

The other big topic for those in serious relationships is that of having children. Often your views on having children, as a young person impacted by HD, will have been influenced by your own experiences of growing up in a family with HD. some of you may feel that having children is not something you want to do because witnessing the progression of HD is tough for a child. A lot will depend also on your genetic status, are you at risk? Gene positive or negative? This information will potentially impact on your thoughts about having children. There are now some options for having children without the risk of HD, if that is an approach that interests you, check out the having children section for more information on all the options available. It’s important to talk through any views you have on having children with your partner, because unlike genetic testing, this is a decision for both of you to make. Look at the options together, talk about them all and then make the best decision for you both! Try to be understanding of each other’s positions if different. Is there a middle ground where you can both agree?

Support each other

Fundraising

Throughout your time together as a couple, HD will impact your lives in some manner. When it does the main thing is to face HD together. Be supportive for each other and be proactive against HD. If that means attending support group meetings, events, conferences or doing fundraisers together, taking a positive approach against HD as a young person impacted by HD and together as a couple will ensure you have a strong relationship despite HD and result in you feeling more able to cope with whatever HD throws at you.

Friends

When you are a young person impacted by HD, having friends who understand and support you can be a great way to help you cope with what’s going on. HD can bring some challenges to a friendship, old or new.

Telling your friend about HD

For example, when is the best time to tell your friend that HD is in your family and how can you do this? Telling someone about HD impacting your life is always a brave step to make, and can be even more so when that person is a close friend, you may not be sure how they will react. Will they understand? We have some great tips on how to tell your friend about HD in the talking to friends and family section, check it out and see if that helps you.

Help your friend get educated on HD

Once you’ve told a friend about HD, that won’t be enough in itself, in fact it’s really just the start of a longer journey your friend will have to go on if they want to truly understand how HD impacts on you. Help your friend with this journey, if they are willing, by educating them about HD. We have some resources that can help you do this such as the top tips for friends section, which is full of useful content as well as our ‘What is HD?’ brochures which you can order for free and hand out to your friend(s). Once your friend has a good understanding of not only HD, but how it impacts on your life, they will be better able to support you when you perhaps need them to.

Talk about HD

We highly recommend you to try and keep talking about HD with your friend. Even if you’ve told your friend initially that HD is in your life in some way, that brave step can be undone quickly if you suddenly stop talking about HD with your friend, they may assume you don’t want to talk about it now, which you may not! But if you truly want your friend to be there when you want to talk about HD, then keep the communication channels open. This will let your friend know that HD is a topic you’re happy to talk about and it can be so rewarding for you to have a friend that you can talk to about what’s going on for you.

Meeting the family

Having your friend come over to your home and meeting your family can be a big step, especially if someone in the home has HD. As a young person impacted by HD you may feel embarrassed about bringing a friend home because you don’t want them to witness HD on your loved one, which is completely understandable. Speak to your friend about any concerns you have with them visiting your home, if you want them to visit then perhaps let them know what to expect from your family member with HD, what symptoms do they have, can they communicate well or do they need some help? This information will help your friend feel more prepared for what to expect. Similarly, maybe you can speak with your family about your friend visiting as well, so that they know to be prepared for the visit. It can be difficult, if you need help let us know.

Having fun together

Football

The main thing to remember about having friends is to enjoy your time with them! That’s what friends are all about, having fun together and being there for each other. HD can impact on your friendships, but if you try and be open and honest with your friend, help them to understand the situation, you can control the impact quite well. Friends can be great for forgetting your troubles for a moment and just having some fun together, so enjoy your time and try not to let HD get in the way too much.

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, 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 have been/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 affected by Huntington’s disease and we have a page on facebook and a message board, 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.

Overall, relationships can provide lots of worries for people from a family affected by Huntington’s disease. Knowing who to tell, when and how, can all be difficult to judge, and making commitments in serious relationships can bring with it extra complications and anxieties. None of this should stop you from being happy and living your life. Actually, being open and honest about Huntington’s disease to your partner or friends can bring with it that extra support you may need at times as well as making your relationships stronger in the long run.