Some families feel closer as a result of a diagnosis. But family relationships and friendships can often be complicated. This can include how everyone responds to the emotional impact of living with a rare condition. 

Some people may also offer up advice or suggestions which are not relevant to you (or your situation). These may not always be based on much understanding of you, your rare condition or how it impacts on your life. This can feel frustrating and bewildering.

Your wider family

Families are all different in how they deal with difficult or unusual situations, or how openly they talk about difficult things.

This includes issues around:

• physical and mental health
• relationships
• difference

You or your extended family may not have had much experience with healthcare, disabilities or differences before. Or maybe you have had a lot of health problems in your family generally, perhaps as a result of a genetic condition that has only recently been diagnosed.

For some families, a rare condition is talked about quite openly. In others, it may be hardly talked about.

The diagnosis of a genetic condition can raise a lot of difficult feelings in families. Not everyone may want to deal with them in the same way, and feelings of guilt or anger can sometimes make it harder to talk about them. You might all hold different views about things like genetic testing, or related issues like family planning.

How to open up conversations

In the early days of a diagnosis, bear in mind that everyone will respond (and cope) in their own way as they come to terms with the information.

After the initial shock of a diagnosis has passed, it can become easier to talk about together even if it was difficult originally.

Providing information (like from a rare condition organisation) about your condition, or leaving it laying around at home for when family visit, can help open up conversations – particularly if you say it would mean a lot to you if they read it.

Friendships

Some friends can be a great source of support. Often friends are the ‘family we choose’.

Other friends may find what you or your family are coping with too difficult to understand or face.

Some people can be very supportive in the early days of a diagnosis, but find it hard to understand the ‘stress and strain’ of how a rare condition can impact over time. They may even ‘forget’ about it, particularly if your condition is less visible.

When people make (often well intentioned) suggestions about how you ‘should’ deal with a situation, or talk to you in a way that shows their lack of understanding, it can feel very upsetting.

When people say ‘you are looking well’, I always want to say ‘yeah, but you should see my insides.

Asking for support

Having even just 1 or 2 people in your life that you feel understood and supported by can make all the difference to how you feel.

Asking for support may not always feel easy, particularly if this has not been a good experience for you in the past.

We often hope other people will just ‘get the hint’ about what we need or want. We then get disappointed when they don’t! 

Remember that what is obvious to us, may not be obvious to others. Learning to speak up about what you need and want opens up the possibility that you will be responded to in the way you hope. If you get knocked back, try not to take it personally. Think if there is anyone else you could approach instead and try again.

Know ‘who is good for what’

Some people are good at practical support, others are better at emotional support.

Someone may not be very comfortable talking about feelings, but they might be great for running errands. Another friend may always be ‘up for a chat.’ Try not to muddle up these two sorts of people as this can be very frustrating!

You might have friends or family who are particularly emotionally challenging to be around. They might leave you feeling stressed, or emotionally vulnerable. If possible, limit time spent with them until you are feeling stronger.

If you are someone who doesn’t find making friends easy, or you have lost confidence in friendships (perhaps because of your rare condition), rare condition organisations can be a good place to turn to for building confidence and connections again. Many offer both online groups and face-to-face meet-ups.