• When it comes to your condition, it can feel difficult to know who to tell what.  Sometimes, even people who you feel are close to you can respond to the information you give them in a way that is hurtful, or thoughtless. Hopefully, most people will be supportive and understanding and when you feel ‘ok’ about what you have to say, this often ‘rubs off’ on them too!

    Scroll on down for some hints and tips to help you and videos of Sofia’s and Sarah’s experiences:

Talking to Friends

  • Building new friendships and relationships can leave you wondering if you need (or want) to say anything about your condition. There isn’t a set formula as this is a very personal decision. Some people like to keep their condition more private and only discuss it with people they feel really close to. Others prefer to be up front and open with everyone, and find that talking and being open about it works better for them.

    Many friends will hopefully be kind and interested, but some may respond unhelpfully, be dismissive or forget over time. A negative response can be very upsetting. Try to accept that not everyone will behave in the way you would like. You might find it useful to tell someone what you find helpful and what you don’t.  How they react to this this may then guide you on how much information you share with them going forward.

  • Having at least one friend at school, university, or work who is aware of your condition can really help. That way, if you’re having a hard time, there’s at least someone you can talk to. If you don’t feel able to do that, at least letting a teacher, personal tutor or manager know if you are having a difficult time, either emotionally or physically, is important.  This can really help too with negotiating absences for appointments, or if you need to make any adjustments to your workload, commitments etc.

  • Being straightforward is often the easiest way to let someone know that you live with an life-long medical condition.  Upcoming hospital appointments can be a good way to start a conversation:

    I have to go for some blood tests on Friday. I have an medical condition that they have to monitor called ……………….’


    ‘I’ve just found out I have a life-long condition called ……………………..like my Mum/Dad. It’s been a pretty intense time.’

  • A friend will often ask more at this point, but even if they don’t, it’s opened a ‘door’ to be able to return to the subject again when they may feel more prepared for a conversation.

    If you are unsure who to tell and how, sometimes a conversation with a family member can help.  AMEND also run two WhatsApp Groups for 13-17 and 18-30 year olds.  For more information on how to join a Group, visit our webpage.

Sex and Relationships

  • Starting a relationship can feel nerve-wracking enough on its own!  Deciding who to tell what, when and how is not easy, but here are some things to bear in mind:

  • Get it out there? Or just see how it goes……..?  

    Some people like to be very upfront about their condition with a prospective partner and ‘get it out there’ at the start.  Others prefer to wait and see how a relationship develops over  the long-term. There is no one correct way to go about this.

    If it’s someone you might be seeing only once/twice, you might not feel any need to explain the intricacies of your DNA profile! Bear in mind that if you have surgery scars, you might find it helpful to decide what to say about them in the ‘heat of the moment’! Sometimes it’s enough to say:

    ‘I had an operation on my (insert here!) as it wasn’t working so well’


  • At other times you might want to say more – either in advance or later. It’s up to you and what you think will be most comfortable in that scenario.

    If it is a relationship you are hoping might be long-term, then you might also have concerns about how your partner might respond or what your condition will mean for your relationship.  The important thing to remember is that if you are going to be together over a life-time, then living with the implications of your condition will be part of the ‘deal’ for both of you. In due course, that might also involve discussing whether or not you want children.  There is more information about that here.


    For women, it is important to talk through your contraceptive choices with your hospital doctor as well as your GP. Using oral/injectable hormonal contraceptives (e.g. ‘Depo’ or ’The Pill’) may impact on either your condition or your medication, so it’s worth checking up about this.  The same is true for the ‘morning after pill’, and it can be useful to have a conversation in advance with your hospital doctor to find out if it would be ok to use should you ever need to do so.

  • With any inherited condition, it’s helpful to remember that it can be passed on to any children you may have in the future. There is more about that in our booklet ‘Starting a Family’ here.  This means that, in due course, you might want to think through how you feel about this, and how to talk to a prospective long-term partner about it. Choosing a method of conception is a very personal decision.


Young People's Experiences with Friends & Relationships

  • Sofia is a young teenager and has suffered teasing at school.  She has some great friends who stand up for her!

    Sarah is in her twenties and suffers anxiety around relationships after so many operations.

    Watch their films below.

  • School: Sofia

  • Relationships: Sarah