You and your emotions
Acknowledging your feelings, how to manage them, finding hope
Acknowledging and recognising your feelings is one of the first steps in working out how best to cope with them.
Acknowledging your feelings
There is no right or wrong way to feel when you receive a diagnosis. You might have a lot of strong feelings straightaway and/or find that different feelings emerge over time.
It can also take time to work out what you think and feel. We all process feelings differently, at a different pace, and in different ways.
Below are some of the feelings commonly experienced and some suggestions of ways to help manage them.
If you have a partner, looking at the list with them might also help you talk to each other. You may not necessarily be having the same feelings at the same time, but sharing how you are feeling can help you start dealing with the news of a diagnosis together.
Shock & disbelief
Even if you have been looking for, or expecting a diagnosis, it can still feel a shock. You might feel bewildered, or wonder if it’s correct.
If you have been looking for a diagnosis for some time you might feel relieved that you now know what is ‘wrong’. Having a name for, or way of describing a genetic condition, can also help you explain it more easily to others.
As part of coming to terms with a diagnosis you might also have thoughts such as ‘why me?’ or ‘I can’t believe this is happening’.
Finding ways to ‘make sense’ of what happens to us in our lives is part of being human. There are often no easy answers to these big life questions. However, it is important to hold in mind that having a rare condition is not your fault.
Worry or fear
Feeling worried or frightened about the future, or how a condition might impact you or your family over time, is very understandable. It can help to bear in mind that we often fill the future with our worst fears and worries, particularly when there is a lot that may be uncertain or unclear. Things will not necessarily unfold in the way we first imagine.
Try to take things ‘one step at a time’. If you have specific questions, worries or fears try to find the right person who can help you think them through. This person might be a friend or family member, a professional, or someone from a rare condition organisation.
Guilt
It might help to know that guilt is a very common feeling when you are impacted by a rare condition. This is the case whether you are affected with the condition, or are a partner/carer or a parent.
You might feel guilty about:
- the impact on people you care about
- wishing a partner or child were different
- not coping in the way you would like to
- being reluctant to take on a new role
- being angry or emotional
- feeling jealous towards other people who are not so affected
- about passing the condition on
Managing your guilt
Remind yourself that you did not choose to have your condition. If your child inherited their condition, you did not choose this either.
Focus on things that you have more control over, not the things you don’t. This might include how you show your love and care to the people who matter to you.
When we are dealing with difficult situations, or coping with changes, we are not always at our best. Try to be patient and kind towards yourself.
Shame or embarrassment
Society (and sometimes families) can often have a very narrow view of what is normal. This can include how we look, behave or what we can do.
What makes us feel embarrassed or ashamed is very personal. We are not all vulnerable to being shamed in the same way. If we feel ashamed or embarrassed, sometimes other difficult feelings get involved too, like anger or guilt.
Experiences you may find embarrassing or shameful might be:
- when you (or your child) look or behave ‘differently’
- needing time or help with certain tasks
- not coping (physically or emotionally) as well as you would like
- physical symptoms that affect how you look or sound, or need to do things (like eating or using the toilet)
- having certain difficult thoughts or feelings
- some medical procedures
Coping with your shame or embarrassment
- Remind yourself that you are not ‘bad’ for feeling ashamed or embarrassed, there are often complex thoughts and feelings involved.
- Notice your self-talk, if it starts to get negative or critical, try to use a phrase like ‘I will choose to be kind to myself’.
- Try to meet others who are coping with similar challenges, this can help you feel less alone.
- Let someone know how you feel so they can then provide ‘moral support’ or reassurance in difficult situations.
- Shame or embarrassment usually eases over time as you get more used to the impact of a condition and coping with it.
- Ask for help and advice from a healthcare professional if you need to.
Therapist Tip
‘Sunflower lanyards’ can help you access facilities, understanding or support in a public place if you have an invisible rare condition.
Anger
Feeling angry for a whole range of reasons when you have a rare condition is very understandable.
You might feel angry:
- towards family or friends who do not understand, or respond as you would like
- about the added complications to your life that a rare condition brings
towards health, social or education systems or professionals - about the fact the condition is part of your life at all
Finding healthy ways to accept, manage and express anger is really important. When we don’t do this it tends to ‘go inside’, or get expressed in ways that upset someone close to you.
Managing your anger
- Try physical actions that ‘let it out’ like finding somewhere private and yelling/screaming, and/or hitting a cushion or pillow. If possible for you, some exercise or movement can also help.
- Distract yourself – listen to loud music, play an aggressive video game, cover a blank piece of paper with pen scribble.
- Ask yourself if anger is the ‘tip of an iceberg’? Is there sadness, grief or fear underneath it too?
- Talk to someone who will ‘get it’. This might be a friend, family member or a professional.
Resentment and envy
Resentment and envy are feelings we might not like to talk about much, but we all experience. You may feel resentful at what other people have, or the ways in which your life is different or difficult.
Sometimes envy can feel so uncomfortable that we withdraw from other people, rather than ‘run the risk’ of it being seen. Sometimes envy can put you in touch with other feelings too – like shame, or anger.
Managing your resentment & envy
- Remind yourself that feeling resentful or envious is very normal.
- Keep in mind that social media does not present a realistic and ‘rounded view’ of life. There is a fine line between it being inspirational and provoking envy.
- At the end of a day, try to think of 3 things you have felt grateful for or good about. This can act as a balance to the things that have felt difficult.
Loss & grief
The most significant loss experienced with a diagnosis is often that of the ‘imagined future’ – how you imagined things would be without the rare condition as part of your life.
It will take you time to work out how your life now might look different to that which had existed in your mind before your diagnosis, and how things might change.
Managing your loss & grief
- Try not to make too many assumptions about the future too quickly.
- Bear in mind that working through change and loss takes time, the feelings that you have initially will be different with time.
- Try to hold in mind that even though there may be a lot to cope with, you will have help.
We talk more about uncertainty, change and loss here.
Feeling alone or different
Feeling lonely – or alone – is a very painful part of being human. It’s likely all of us have felt it at some point in our lives.
Being diagnosed with a rare condition can be a particular kind of loneliness. You may not have heard of anyone with your condition before, and it is unusual to just ‘bump into’ someone else with it.
Healthcare professionals may also not be very familiar with it, and even if you and a family member have the same condition, you might both be affected quite differently.
Some conditions may also make it harder to interact with the world in the way you would like to. This might be because of their physical impact, or their cognitive or emotional impact.
Managing feeling alone or different
- Rare condition organisations can help you feel less alone, even just knowing they are there can help you feel less isolated and you can get involved as little or as much as you like.
- The internet now makes it possible to be in contact with people from all over the world – even if only you and one other person have your condition, it’s now much more possible to find each other.
- Non-rare-disease communities or groups such as those for disabilities, facial differences, neurodiversity, SEN parents or carers can also be very supportive. Your Local Authority website, library or GP surgery often have details of what support is available in your local area.
Exhaustion or fatigue
Coming to terms with a diagnosis can be both physically and emotionally exhausting. It is not unusual to feel very tired, especially in the early days.
This is because of the amount of emotional processing you are doing, on top of all the healthcare interactions you might be having in addition to everyday life.
Managing your energy levels:
- The early days of a diagnosis can be particularly tiring.
- Consider taking some time off work if you can and feel this would help.
- Say ‘no’ to additional demands on your time and energy as best you can.
- Ask for help with practical tasks from friends/family where possible, this might be with making meals or transporting children.
- If you have a number of hospital appointments, ask if they can all be on the same day (if this would work for you)
We talk more about managing stress and coping with fatigue in our Practical Strategies section.
Hope
Receiving a diagnosis may bring up all sorts of feelings, including hope.
Receiving the news of a diagnosis can help you start looking for and accessing the support, help or treatment you need in a more targeted way. This process may still not be easy or straightforward. However, it can mean that you have another ‘piece of the puzzle’ to help guide your search for more information or future decision-making.
Living without a diagnosis means finding a way to maintain hope in a different way. It may mean continuing to search for a diagnosis, alongside the belief that you will cope with whatever lies ahead.
Managing hope
Hope can be hard to maintain alone. Seek out others who give you encouragement and optimism about your capacity to cope.
What inspires hope is a very individual and personal experience. It may come from the relationships with people around you, but can also be inspired by science, art, poetry, religion or other personal beliefs. Try to notice what helps keep you hopeful.
There may be times when hope has to be finally ‘let go’ of, perhaps about finding a cure or if facing decline. This is very painful, and often happens in stages. Find people you know and trust to help you come to terms with this grief and loss.
Resources & useful links
Every Mind Matters is a campaign run by NHS England and features a useful ‘My Mind Plan’ to help you design an action plan that best supports your mental wellbeing for you as an individual.
Unique have a guide on mental health and wellbeing.
For personal stories from those living with a range of conditions:
Finding others with your condition:
Related pages
Looking for a diagnosis
Tips for waiting for and going for genetic testing
Early days
Receiving a diagnosis, reimagining the future, pacing yourself
Living with a rare condition
Rare challenges, ‘expert by experience’, living as well as possible
You and your emotions
Acknowledging your feelings, how to manage them, finding hope