Feeling stressed – at specific times or ongoing –  in the context of living with, or caring for someone with, a rare condition is very common.

You might be attending appointments, negotiating with schools or employers, juggling caring/family responsibilities, making difficult decisions and managing treatments and care programmes – all on top of ordinary daily life. This can be a lot to deal with.

Stress that is ongoing or ‘chronic’ can have a big impact on how you feel emotionally.

Some of the stress will be to do with the rare condition itself and how it impacts your daily life.

It might also be caused by people, systems or services not being supportive in ways that could make a meaningful difference to you, or the person you support.

Having to deal with a diagnosis of a rare disease on top of trying to navigate your way around the healthcare system, education system, the local authority, social services – it is all very overwhelming. There is no one to turn to to guide you through. On top of this, I had to leave the career I loved, so financially it was very stressful as well.

What Does Stress Feel Like?

Your body is designed to respond to life challenges as and when you need to. If it feels ‘under threat’ or faces some ‘demand’, it releases ‘stress’ hormones like adrenaline and cortisol. These temporarily raise your heart rate, and your muscles get ‘ready for action’.

It’s these hormones that can cause a ‘tight chest’, ‘butterflies’ in your stomach or anxiety. Sometimes it can be hard to tell the difference between ‘excited-stressed’ and ‘anxious-stressed’ as they can feel so similar. Once a challenge passes, your body returns to a more relaxed state.

However, when stress is extreme or ongoing, your body does not have enough time to recover and relax in between. If your life is particularly demanding over a long period, stress can feel so ‘normal’ that you almost stop noticing it.

However, stress is not good for mental or physical health over the long-term. Being able to both recognise and manage stress is important for you and those you care about.

Recognising stress – know your personal stress signs

We all respond to stress a bit differently, it might affect your feelings, behaviour, your thinking or how you feel physically.

Feelings

Stress can make you feel:

• • jittery’, tearful, anxious, exhausted or numb
  • emotionally ‘up and down’
    on a ‘short fuse ’ or that
  • something difficult is the ‘last straw’

‘Compassion fatigue’ is a particular type of stress used to describe the experience of no longer being able to respond kindly or empathically towards someone (including yourself) who is in pain or distress. It might involve feeling numb or ‘switched off’. It can involve feeling very critical towards yourself, or a person you are caring for.

Behaviour

Stress can impact how you behave, or your capacity to self-care.

It can include changes to your:

• • eating, or alcohol use
  • smoking or use of illegal/prescription drugs
  • physical self-care
  • internet or social media use such as  compulsive late night ‘scrolling’
  • not engaging with people or activities that matter to you
  • being more irritable than usual with people close to you

Thinking

You might find yourself:

• • very negative towards other people
  • pessimistic about a situation getting easier
  • very self-critical
  • finding it hard to concentrate
  • anxious about making decisions

Physically

Sometimes it is our body that ‘shows us’ how stressed we are.

Stress can also show up as:

• bodily aches and pains
• symptoms feeling -or getting- worse
• headaches, migraines and/or tummy upsets
• getting more bugs or viruses than usual
• changes to menstrual cycles
• exhaustion or fatigue

Learning to identify and manage when you are stressed can help you and your doctors address any physical health difficulties better.

Stress – or distress?

Some stress is really ‘distress.’ However, it might feel more acceptable to you to say that you are ‘stressed’ rather than upset, anxious, or needing support.

Stress and distress arises in situations where we have little choice, and which have few or no benefits. This might include the emotional strain of either witnessing or experiencing difficult symptoms, trying to find the right care or treatment, financial worries, or difficult relationships with a partner or in a workplace.

It can include the feeling of despair that your condition will never be properly responded to or understood.

The Stress Bucket

The Stress Bucket is way of thinking about and managing stress. Both ‘ordinary life’ and ‘life with a rare condition’ involve particular stresses.

We all have a different personal capacity for coping with stress generally.

However, a rare condition will always take up at least part of your stress bucket – how much will depend on things like:

• your particular condition
• how much it is impacting you and your life right now
• how confident you feel in your healthcare team
• the logistical burden of attending appointments
• how much support you have

When your, or the person you care for, rare condition is stable (or ‘going ok’) you have more emotional and physical energy to cope with some of life’s other demands. Equally, when things are not going well, it will feel harder to cope with other life demands.

When ‘ordinary life’ is very demanding, it can also make it harder to manage the impact of the rare condition that is also a part of your life.

Managing stress

Some of the strategies below can help you cope with stressful feelings as they arise, and how to manage stress longer-term. Not all the techniques here might feel possible for you and your situation. However, even just trying out one or two approaches might help to make a difference.

Accepting limitations

Accepting that we as people, or those around us, have limitations (physically, practically, or emotionally) is very hard. Often it is not accepting our own or others limitations that ‘gets things done’, and makes positive changes in the world. This is then very rewarding. However, it can also be tiring. At times, there is wisdom in accepting we have to rest, step back and accept how something is. Even if only temporarily. This is ok too.

Asking for help

Acknowledging stress or overwhelm and asking for help can feel difficult. This is particularly true if you have been disappointed or let down in the past. However, we all need support from other people sometimes. Our sources of support section gives more ideas of how to identify who to ask, and where to turn to.

Be brave. Don’t give up.

Check your ‘emotional battery’

Life is often a balance of relationships and situations that either ‘drain our batteries’ or ‘recharge’ us.

When this becomes unbalanced, we are much more likely to feel stressed, exhausted or burnt out. It’s not always easy to (and you may not want to, for a variety of reasons) limit access to those people or situations that ‘drain your battery’.

However, knowing who or what ‘recharges your battery’ and who or what drains it, allows you to sometimes make more considered choices about what your needs.

This includes recognising:

• • When you might need to seek out, or make time for, those people or activities that help ‘recharge’ you.
  • How or what drains you and how you can limit (or compensate) for this.

Use ‘base camps’

When it feels like there is a ‘mountain to climb’ remember this is not possible all in one go. Mountain climbers tend to focus on just the next immediate stage of a journey. They ‘pause’ at regular intervals to rest and recover.

Breaking bigger tasks down into smaller ones helps prevent the feeling of overwhelm. For example, it may feel very daunting to be facing a particular treatment, or financial problem.

Break tasks down into as many smaller tasks as you need to.

Recognise the achievement of completing each stage until that ‘mountain has been climbed’.

Other activities to help relieve stress

Music

Music is a really powerful way to de-stress, and help manage your mood generally. It can help you express how you are feeling by listening to music that reflects your feelings – for example, sad music when you are feeling sad, or loud or angry music when angry.

It can also help shift your mood. Try listening to energetic or hopeful music if you are feeling low or calming music if feeling anxious.

Cove is a free NHS App, where you can select and create music to help identify and express feelings day by day as a tool for relaxation.

Exercise

Even a small amount of exercise or movement can help relieve stress. It not only helps your body ‘detox’ from stress hormones, but releases ‘feel good’ ones.

Consider:

• Gentle exercise such as chair yoga, stretching or ‘progressive muscle relaxation’ if movement is painful or difficult for you.
• Energetic exercise such as boxing, running, brisk walking or team games.
• Computer games –  there is a lot of evidence that gaming can help channel anger, offer distraction from pain, and ease isolation too. If exercise is difficult for any reason in real life, it might be possible in ‘virtual life.’

Get yourself active is a campaign to support people with disabilities into exercise.

NHS Fitness Studio has a range of free videos and workouts, including for people with restricted movement.

Creative activities

Making art, mindfulness, colouring books, and ‘crafting’ can also help manage anxiety, low mood and pain.

The Arts Council provide a list of free and low cost craft activities and workshops across the UK

Creative writing, and journaling

Writing down your feelings or how your day has been can be a helpful way to make time to focus on yourself, but also get thoughts and feelings out onto paper rather than feeling full up with them inside.

Political activism, or advocacy involvement

Some stress is as a result of stigma, prejudice or systems that do not work as they should. Becoming involved with others in order to try and bring about change together can help channel frustration, ease isolation and foster hope. This could be a rare condition organisation, a parent-carers group, an anti-racism or a LGBTQI+ community. See what is available in both your local area, or nationally.

Mindful moments

Slowing down and doing something ‘mindfully’ can help manage stress and help you feel calmer.

Just about any activity during your day, e.g. making a meal, exercise, or caring for your child can all be done ‘mindfully’, by bringing to it your full attention and focus. This can feel a little strange to start with!

Bringing your attention ‘fully’ to an activity or situation can feel difficult. However, learning how to do this effectively can relieve the ‘stress and strain’ of a busy mind.

Learn some relaxation and mindfulness techniques

Learning techniques from Mindfulness, or learning some relaxation techniques, can help you manage stress both ‘in the moment’ and longer term. We have some techniques you could try here.

Mindfulness can be very helpful for stress management, as well as pain, fatigue and anxiety. At Rareminds we sometimes run workshops and 8 week programmes for condition-specific organisations or a general groups on these subjects.  If you would like to register interest in these, please email contactus@rareminds.org.

Bath NHS Foundation Trust have a useful introduction to mindfulness, and signposting to resources.

Breathworks is a leading mindfulness organisation with a transformative approach for managing pain, illness and stress.

Other sources of support

NHS – 10 Stress Busters

The Stress Management Society provides lots of free resources and guides to managing stress ‘little by little.’