What makes a feeling ‘difficult’ is different for all of us.

It is not only ‘negative’ feelings such as anger, despair or anxiety that can feel difficult.

When you are impacted by a rare condition, you might have experienced a lot of disappointment, or felt let down. Sometimes having feelings like hope or desire can then feel difficult or anxiety-provoking too.

You might find it helpful to read through the sorts of feelings that are common at diagnosis as these often re-emerge across the rare journey .

What makes a feeling ‘difficult’ depends on a number of factors.

These include:

• how strong the feeling is
• if we think we ‘should or shouldnt’ feel that way
• the context of when and where we feel something, or towards whom
• worries about what certain thoughts or feelings might ‘say about us’

Feelings are not ‘good or bad’

Feelings are our brain’s attempt to make sense of what is happening to us in life. They are like ‘flags’. They try to alert us to our needs and desires, or when we might be in danger of hurt or harm.

It is not always easy to work out what your feelings are trying to ‘tell you’ about yourself or our life. It’s also not always easy to know how best to respond to them either.

Try not to ‘judge’ a feeling. If a feeling is frightening you, or you are worried you might act upon it, remind yourself that you are in control of your feelings, they are not in control of you.

Feelings need ‘air time’

Feelings are a bit like small children. If we try to ignore them or push them away, they tend to just get louder and more demanding as a result. Sometimes, we don’t want to feel the way we do.

Learning to accept the feelings we have, be curious about where they are ‘coming from’, and how best to respond and look after ourselves in the face of them is an important skill.

Giving our feelings ‘air-time’ helps them feel ‘listened to.’ It can also be less tiring overall than trying to keep them at bay.

Examples of giving your feelings ‘air-time’ might be:

• Talking to someone you trust, and who is a good listener. This could be a friend, family member or someone from a support group.
• Playing music that reflects what you feel such as angry or sad.
• Techniques to ‘ride out’ certain difficult feelings until they pass. We give suggestions here.
• Journalling or writing down how you feel. This might be regularly, or during times that feel particularly hard or complex.
• Painting, drawing or other creative activities. You don’t have to be ‘any good’ at these as it’s the activity itself that’s helpful.

When feelings ‘aren’t helping’

There may be times when you have to find ways to put your own feelings to one side. This might be in order to deal with a difficult situation, or to look after another person .

Some examples might include if you have to go through a difficult medical procedure (or support a child or partner with one) or when you feel at the edge of your ‘capacity to cope’ or overwhelmed.

I spent the whole night before the operation trying to work out if I could just not go, change my mind, not turn up. It took all my energy to not just ‘run away’ to be honest.

Sometimes when we feel on the ‘edge of coping’, feelings can erupt out in ways we don’t always feel good about later.

My son sometimes gets into a ‘loop’ of arguing that is exhausting. I know he can’t help it, but sometimes I just want to scream.

Difficult experiences

A difficult experience (perhaps on your rare journey) can influence the degree of fear or anxiety you feel in certain situations. This might be particularly if your feelings at the time were also ignored or minimised.

A difficult experience can make it difficult to accurately ‘trust’ your feelings going forward. If this has been the case, it’s ok to let others know that you might be ‘extra’ worried , frightened or anxious for good reason. They can then take this into account with how they support you going forward.

Re-building confidence again in both your own perceptions, and the care of others, can take time.

Treat yourself gently. Things can be different.

When feelings are biologically driven

Some rare conditions or medications and treatments can impact you neurologically or hormonally.

This can then also affect how you (or someone you look after) feels, or the type and intensity of emotions that are experienced.

Trusting your feelings (and other people, or situations) as ‘accurate’ is then also harder as a result too.

If this is an aspect of the rare condition you are impacted by, talk it through with your rare condition doctor about how best to manage this. There may be a range of strategies or approaches to help you cope with difficult emotions, moods or behaviour.

You are not your feelings

Sometimes, we confuse ‘who we are’ with ‘how we feel’.

Being able to notice and describe the feeling you are having gives you more control over it.

This helps it to ‘loosen its grip’ on you. For example, saying ‘I am frightened’ defines the whole of you as afraid. Instead try saying ‘I feel frightened’. This means that part of you is ‘observing’ your fear, and can help you better manage your fear.

Mixed emotions

Feelings are messy. It’s not often we have just ‘one’ feeling about someone or something.

You may feel that something is a positive thing to do (such as having a particular operation or treatment) but also be scared, want to avoid it, or wish it were different.

Mixed feelings towards the people we care about – or for –  are also very common.

However, this can sometimes feel very shameful. Parent-carers and partners in particular often experience strong ‘mixed feelings’ towards their partner or child, or about the situation they are in.

Becoming ‘more comfortable’ or accepting of your own mixed feelings can be very helpful, and also a relief. They do not mean you are a ‘bad person.’

When to seek additional help

At times we all need to ‘check out’ how we are feeling with people who we feel safe with and who know what we have been through. How best to understand, and find ways of managing, difficult feelings often happens most effectively with the help of people we trust. These might include friends or family, healthcare professionals, support groups, and professionals like psychologists or counsellors.

If you feel in crisis

Should you feel overwhelmed emotionally, or like you might harm yourself or another person, do reach out – there are organisations that can help.