Telling People
Some rare diseases present obvious features or symptoms, making it more likely you’ll be asked about the condition. Others are less obvious and people may not notice unless you tell them.
Whether your condition is visible or not visible, you may be on a diagnostic journey because rare conditions can be tricky to identify. When you do obtain a diagnosis, which could be clinical (based on a doctors examination) or genetic (based on a genetic analysis of a blood sample), you will need to think about telling people.
You may want to share news of your diagnosis, especially if people around you were aware that you were seeking one. However, even telling friends and family can be tricky sometimes because they may not react to the news in the way you were expecting. You may find your own reactions surprise you and that you need to take time to adapt to the news yourself before you share it. Sometimes a diagnosis brings clarity and relief, other times it can feel like a door closing. There is no right or wrong way to feel and it can take time to accept and adapt.
Who to tell & how
Our relationships and the people who matter to us are unique. Only you know who is important to you and what you want them to know.
It is worth remembering that people will want to support you, but they can only do so if they know what is happening. Think about who it is helpful to have around you and be ready to be clear about what support you do and do not need. We are not all the same and this may be a new situation for them too.
There will be times when it is both responsible and necessary to talk about how your disease impacts you or your child, most notably with employers or service professionals, schools, friends or family members. You do not need to rush out and tell everyone. You might find it helps to spend some time thinking about your disclosure list:
Must know
Would like them to know
Only if they ask
Never needs to know
You might want to ask someone to help you share this information. For example, if you have received a genetic diagnosis from a regional genetics service, they can provide you with a ‘Whom it May Concern’ letter. This is particularly useful if your diagnosis has health implications for other family members.
Your lead health professional will ask your permission to share information about your health with appropriate health professionals. However, you may want to check that your key health professionals such as your GP are aware.
Telling children
When to tell a child, or whether to tell them at all, might depend on their age, their understanding, and what you feel they can cope with. Generally, it useful to think about giving children information in small doses and repeating these conversations. Ask them what their questions are and allow silences. Their perspective and understanding will be different to yours.
Keeping them in the dark does not necessarily protect them or their relationship with you.
When should I tell people?
You need to tell people when you are ready and at a time that feels right for you. For some people the right time is straight away, but for other people it is as the rare disease progresses. You can choose to tell different people at different times and on a ‘need to know’ basis. Whatever information you decide to share, try to think about how the person you are telling would like to be told.
Are you looking for more direct support, or want to belong to a wider rare disease community?
Our RAREhub and RAREnavigator services can help - in a way that suits you and your family.