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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.
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.
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 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
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.
The partner has a difficult role to play; Huntington's disease is a serious condition and the impact on the whole family is huge. A person stepping into that 'partner role', with someone in a family affected by Huntington's disease, will need to be understanding and supportive, but also willing and able to enter a relationship that requires some work at times (what relationship doesn't anyway).
There are some basic things a partner can do that can help. When a person first learns that their partner has Huntington's disease in the family, the chances are they will have never heard of the condition before. A person can really help their partner by educating themselves about Huntington's disease, understanding the condition and learning how it affects not just the person that has it, but the whole dynamics of a family (perhaps read our info on 'Living in a family with Huntington's disease' and other relevant sections). Huntington's disease is not an easy condition to understand, the impact on the family is complex at times, and this is where doing your research pays off. Once a partner understands aspects of the disease then they can use their knowledge to provide support, listen to their partner's concerns and try to calm any fears they have.
Talking about issues and sharing perspectives on a situation can be beneficial as well. For example, the issue of having children might be a genuine concern for someone in a family with Huntington's disease. It is an issue that people often have fixed views on as a result of being around Huntington's disease. Yet, it is something that you should both discuss together as a couple. Recognising each other's views and understanding the reasoning behind those views can help you both come to an agreement as a couple on issues such as having children. Discussion and understanding of each other's perspectives are key to making relationships work.
It is also important for you, as the partner, to raise any concerns or questions you have regarding Huntington's disease. Relationships consist of two people (usually…) and this should mean that you are able to receive support and understanding too, so that any concerns you have are heard and understood. If your partner is impacted by Huntington's disease then that impact is undoubtedly going to affect you too. Do not feel that it should necessarily be you performing the 'supportive role' all the time. It is important any concerns you have are addressed as well. This can often be overlooked, but it is important to remember that the partner of someone affected by Huntington's disease is entitled to support just as much as anybody else.
Finally, getting involved - as a couple - with support meetings, events or fundraisers for Huntington's disease can bring a lot of support, understanding and positivity for you both. Being proactive against Huntington's disease together can strengthen not only a person's attitude towards Huntington's disease but also the relationship and bond between you both.
Talking about Huntington's disease with friends
Talking about Huntington's disease with your friends can be difficult. You may find that some friends are better able to understand than others or you may have different friends that provide you with different options. For example, some of your friends may be great for enabling you to get away from Huntington's disease for a while and not having to talk or think about it, whereas others may be great at listening to your worries and offering support.
'I have friends that I go play soccer with, who I never really talk to about Huntington's disease. But at the same time I have friends that I know I can talk to about anything if needed.' Jordan
Your friends aren't mind readers, many of them may want to support you but not know how or what kind of support you want them to give. They may be scared to bring it up in case they say the wrong thing or ask a silly question. This is where it is useful for you to direct them to places like HDYO, so they can learn about the disease and begin to understand how it affects you in everyday life.
There may be people in your life that you don't want to discuss Huntington's disease with such as work colleagues or people at school. The important thing is to do only what you are comfortable with, tell who you want to tell and talk about Huntington's disease with those who you feel comfortable with doing so.
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.