Self-care and Wellbeing

Carers are awesome warriors – motivated, passionate, and deeply caring for ‘their person(s)’.  Caring for family and / or friends with a rare disease can be mentally and physically challenging. It’s important to learn to manage your own health while supporting the person you care for. This may include talking with other carers (peers), building a friendly support network, or seeking professional help.

Looking after yourself and developing positive coping strategies are important for you and the people you look after. Hints and tips throughout a carer journey include:

• Prioritise self-care: Engage in activities you enjoy, spend time with loved ones, and ensure you’re getting enough rest, good food, exercise, and time to recharge.
• Build a support network: Connect with other caregivers, support groups, patient organizations, faith-based communities, local community groups, or even online interactive team games.
• Seek professional help: Talk to health and social care professionals to explore what help may be available to you.  There is no shame in taking professional help on offer – carers don’t have to manage alone; this help is there to support you!  Some people find therapy or counselling helps them address stress and anxiety.
•  Practice relaxation techniques: Meditation, deep breathing, and mindfulness can help manage stress.
• Learn about the rare condition(s) and associated needs: Understanding the condition and its impact can help you better support the individual you care for.
• Acknowledge your limitations: It’s okay to not know everything and to ask for help when needed.  It’s also okay to tell yourself and others, “I just can’t do that”.
• Manage expectations: It can be hard to balance everything you’d like to with what you have time and energy to do. Learning to clearly tell others what is possible is an important step in reducing stress for you and others.
• Practice self-compassion: Be kind and understanding towards yourself, especially during difficult times.

Suggestions below are not medical advice, rather they are things other carers have found helpful.