Starting conversations or giving information

It is a very personal decision deciding how, and when, to let other people know about your own (or your child/ren’s) rare condition.

We are all different with how comfortable we are sharing information about ourselves or how much we want to talk about something.

When you live with a rare condition, it’s not unusual to have to repeat your ‘story’ many times to healthcare professionals so that they can work out how best to treat you. In other situations, you might not always want – or need – to do this.

Sometimes, you might find you do want to say something, but are unsure how to start.

What you say will depend upon:

• the context
• the type of relationship – personal, professional
• how you think the other person will respond
• how necessary it is – are you in a health crisis, talking to a professional, or ‘friend of a friend?
• how private or ‘open’ you are as a person generally

Managing other people’s assumptions

Sometimes, your rare condition may mean people make assumptions about you (or your child’s) physical appearance or behaviour. These might be upsetting.

How you respond, and if you want to challenge this, will be a very personal decision. It may vary according to how you feel at that moment, or the situation itself.

At other times, you might worry someone will treat you differently as a result of knowing about your rare condition, or that you will be asked further questions that you can’t easily (or don’t want to) answer.

What do you want to say and why?

Thinking this through in advance can help you feel more prepared and help you make a considered choice:

• Who are you talking to – a friend, family member, or work colleague?
• What do you want them to know?
• When are you going to talk? It’s good to know that neither of you don’t have to ‘rush off’
• Where so you know you can speak and listen freely
• Why do you want them to know, and how would you like them to respond?

Support at work or in education

Workplace adjustments

If you are affected by a rare condition (either yourself, or as a carer) you can ask an employer (or a place of study) for ‘reasonable adjustments’. These are to help you do your job or studies so you are not at any disadvantage. This could include a shorter working day, different responsibilities, or physical adaptations to your environment.

It is important to know that everyone has the right to ask for these adjustments (including for mental health) but not every employer or place of study will grant them. However, there are laws in place to help prevent discrimination.

Adjustments at university

If you or your child are going to university, contact the Disability Officer there. Their details should be listed on the university website or prospectus. Their role is to advise and help facilitate any adjustments you or your child may need. This could include note-takers, equipment, adaptations to accommodation or extra time. Approaching them well in advance of taking up a role or starting a course is advisable. Things can take time to put in place.

Talking to children & young people about their rare condition

How, when and ‘what’ you talk about with your child in relation to their rare condition will depend on a number of factors. It will include their developmental age, their degree of self-awareness, and their capacity to communicate.

If it’s something you are not used to doing, or you are not sure how and where to start, it can help to start with processing some of your own feelings first.

It’s very understandable if you:

• want to protect them from knowing about their condition
• don’t want them to feel ‘different’
• worry that one or other of you might get upset
• feel guilty (or angry/disappointed) that it is part of their life at all
• are unsure how much to say, or how much they will understand
• concerned about worrying them

It can feel tempting to avoid talking about it altogether, especially if your child is not currently asking questions, or seems unconcerned. However, it is very likely (unless their rare condition is very non-impactful right now) that they will still have some questions or ideas about it at some point.

In general, children tend to think more about their rare condition when it impacts on their everyday life. This might be because they:

• have experiences other children around them may not have such as going to hospital, using aids or taking medication
• look or behave differently
• are not able to do certain things, or have to do some things differently

Process your own feelings about their condition first

Children’s feelings about, and attitudes towards, their rare condition and how it impacts them will be strongly influenced by your own. The more positive, accepting and comfortable you can be about it, the more you will be able to reassure your child.

It is important to your child to know that you are ‘there for them’ whatever their questions and worries, and also that there are other people in the world who help look after them too. This includes doctors.

Taking time to process your own feelings means you can be more emotionally available to your child about their worries or questions. These might be very different from your own.

What do they need to know ?

Using a rare condition’s name, even from a young age, helps to ‘normalise’ it, for example, ‘We are going to see Dr Brown tomorrow to have a check up about your [rare condition name}. We can go to the cafe afterwards.’

Even very young children will find it helpful to understand why they might look or behave differently to others, or need to attend hospital.

Children do not necessarily need to know everything about their condition all at once as this can be overwhelming.

Be guided by what they need to know in order to:

• get on with their life
• make sense of their experiences
• understand any ‘differences’

How much you say will also depend on what they are asking about and what is age or developmentally appropriate.

Childrens’ worries are often very practical –  ‘will it stop me doing something I want to?’ ‘Why do I have that bump?’ ‘Who will look after me if you are not there?’ ‘Will I have to have an operation?’

Anticipating some questions related to their condition can help you prepare too. Some questions will still come ‘out of the blue!’

Some rare condition organisations produce short animations, comics, or story-books to explain about a rare condition to different age-groups. Check to see if your rare condition organisation has these.

Acknowledge feelings – and change

Like adults, children have their own emotional coping styles. Some may be reserved or interested in their rare condition than others, or have different abilities to be ‘curious about’ or understand what it means.

They might express their feelings in different ways. You know your child best and are most likely to understand what they are trying to let you know either verbally or nonverbally, through their behaviour, or through the questions they are asking.

In general, children and young people’s feelings about their rare condition and how it impacts them will change as they get older.

Some young children are very proud of their rare condition or ‘difference’ and want to tell others all about it. Some go through periods of wanting to be very private about it, or feel angry or resentful that it is a part of their life.

A lot will depend on your unique child and their particular condition.

Be a parent who listens

Your child will probably feel more accepting (or ‘ok’) about their rare condition at some points in their life than others.

This will depend in part on how much it is impacting them at that time. If your child starts to struggle with their feelings about their condition or how it is impacting, being an available and supportive listener is one of the most helpful things you can be as a parent.

This might involve acknowledging with them that having their condition might indeed feel at times unfair, frustrating or difficult.

You might also at times feel proud or impressed as their parent by how they are coping with it, or just who they are as a person. Let them know this. It will help them develop a positive, rounded sense of who they are.

Your child or young person will be reassured by your ability to:

• accept and acknowledge how they are feeling
• your capacity to be calm and supportive in any particular moment

If your child becomes particularly anxious, angry or withdrawn at any point, or is struggling with certain aspects of their rare conditions, ask a healthcare professional for advice, support, or sign-posting. They may be able to refer you to the best support including any practical resources, information or aids, or a child/adolescent psychologist or family therapist.

Let them know there are others with their condition (or rare conditions generally)

Some rare condition organisations offer ways for young people to meet other young people with their condition in an informal way. This might be:

• a moderated WhatsApp group
• an online youth group
• in-person events such as information days, social events or fun days

Young people often find it very helpful even just knowing they are not the only one with their rare condition (or a related one.) How much they then want to engage with other young people will vary according to who they are and what they are like. Let them know meeting others is possible if they would like to.

At some point, you might need to explain that not everyone is affected by a rare condition in exactly the same way, at the same time. This can help them be aware that not everyone they meet will necessarily be dealing with what they are, but probably some will.

When you and your child share a condition

Feeling guilty, sad or angry about this is very understandable, but it’s important to remember that you did not choose for your child to have this condition. Inheritance is nobody’s fault.

If you and your child/ren share a genetic condition, how they cope with it emotionally will be shaped by your own attitudes and experience. The more you are able to take a proactive approach to your own health and self-care (even if it’s challenging), the more it will help them to do so too.

This does not mean hiding or denying any difficult feelings you might have. It does mean acknowledging – and recognising – your own resilience.

It can be helpful to let them know that everyone’s rare journey is unique and individual.

Reassure them that all your experience and knowledge has value for them, and you will use this to help them access the best support and care possible going forward.

Talking about ‘difference’

Let your child or young person know that they can always ask you questions about their rare condition, their appearance, or why they have to do certain things that other children may not.

Books and videos can really help with talking about difference, loss or change together.

If your rare condition organisation has any books or animations for children and young people, use these to help you talk together.

Answering questions honestly but gently about their health, visible difference or rare condition (in an age or developmentally appropriate way) will help your child make sense of and cope with their thoughts, feelings and experiences. It will also help them to feel less ‘on their own’ with these.

How much is enough?

Children can be quite good at letting you know when they have had enough information. They might then change the subject or just start doing something else.

Our charity produced a cuddly toy that has aspects of [my son’s] condition. I hadn’t thought he was that bothered by his appearance, but he really took to this toy and kept saying ‘he looks just like me’. He really loves it.

It’s not a good time to talk!

Children and teens often start sensitive conversations at difficult times such as bedtime, on the way to school, or when you are in a rush. If this happens:

• Take a deep breath.
• Validate the asking: ‘That’s a really good question, I’m glad you raised it.’
• Respond honestly but keep things focused on the ‘here and now’. For example, ‘It is possible that one day X might happen. I’ll always let you know as soon as we know anything. But it’s not happening right now, and you are not on your own.’
• Try to answer just that specific question, not ones they haven’t yet asked (that can feel too much).

Sometimes you might agree together to come back to a question, or ask someone else for more information. This could be their doctor, teacher, or another healthcare professional for example.