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Dealing with Changing Emotions

Understanding Your Emotional Journey

There is no right or wrong way to feel when caring. Being honest with yourself and acknowledging your feelings are valid is important. Throughout each person’s caring journey there will be a range of emotions. It is important to recognise different emotions and acknowledge they are ‘real’, to help you work out how best to manage different emotions in a way that works for you.

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A Few Hints and Tips from Carers – Part 1

  • Take things one step at a time – day by day, or minute by minute when you need to.
  • Celebrate small achievements – with the right tools and people, anything is possible.
  • Remember: you didn’t choose this situation. Focusing on what you can control can help reframe negative thoughts.
  • So many situations can make us feel frustrated or angry – playing music, playing a game, walking up and down the hall, shouting out loud, or using “square breathing” can really help.
    (Square breathing = breathe in for 4 seconds, hold for 4, breathe out for 4, hold for 4 – repeat.)
  • Have a hug. Say “I love you.” Smile and laugh – it really does help.
  • Share the load. Whether with a family member, friend, or professional, just talking through your concerns can make a big difference.
  • Writing down your worries or jobs-to-do can make them feel smaller and more manageable.
  • When worried about something specific, find the right person to help give you answers.
  • Keep a list of emergency contacts handy – for beds, hoists, oxygen, wheelchairs, etc.
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A Few Hints and Tips from Carers – Part 2

  • You can only run on empty for so long. Can you take time off work, say no to something, ask friends or family to help, or share practical tasks?
  • Guilt is common… no one is perfect. It’s okay to wish things were different or to need a break.
  • Embarrassment was something I struggled with for years. Don’t worry how others see things – just do what’s right for your family.
  • Feeling isolated and alone is common. Stay connected in whatever way works for you – friends, family, charities, or even online networks.
  • Feelings are how we respond to a situation. Acknowledge them, don’t ignore them – and remember, you don’t have to act on every emotion.
  • Stress! Stress!! Stress!!! Caring often means juggling constant demands. Learn to recognise when it’s too much and know it’s okay to say “no” or ask for help.
  • A good night’s sleep really can make a world of difference.
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Share Your Rare Story

Every caregiving journey is unique and your story matters. Whether you’re a family member, friend, or professional supporting someone with a rare disease, we invite you to share your experiences. Your story could offer comfort, insight, or hope to others walking a similar path.

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