How to look after your mental wellbeing as a rare community leader

Oct 10, 2024

Thursday 10th October 2024 is World Mental Health Day. To recognise this, Rareminds is sharing a blog with us, offering support and guidance for the mental wellbeing of rare disease leaders.
The theme of World Mental Health Day for 2024 is ‘mental health in the workplace’ and here at Rareminds we think this is particularly important for anyone working or volunteering in the rare community.

We all know that rare leaders have great, incredible life and professional skills, expertise and qualities which when combined with lived experience can be an extraordinary force for good for rare communities.

But this combination can bring particular challenges and pressures too, which can over time also have implications for mental health and emotional wellbeing.

In our 2023 survey, 61% of rare group leaders told us they were concerned about maintaining boundaries and knowing it’s ok to step back. 62% of rare group leaders told us their biggest concern in managing the mental health needs of their community was responding to people in crisis.

So if you’re a rare community leader, how can you look after your mental wellbeing?

  • Remember that self care isn’t selfish. It’s not easy to keep your own mental (and physical) wellbeing in mind when you are supporting others, but looking after yourself will enable you to support them more effectively in the long run.
  • Pay attention to the basics of wellbeing like sleep and rest, food and nutrition and exercise and movement. This may feel obvious, and/or challenging to put (or keep) in place, but working towards and holding in mind ‘the basics’ is still really important. They provide the foundation for your physical and mental health overall.
  • Try some relaxation techniques such as box breathing or a grounding technique like 5,4,3,2,1. Practising a simple breathing technique every day can help to reduce feelings of anxiety generally and regular practice also means you can build your skill and confidence in techniques before you need to use them in a situation that is stressful or upsetting.
  • Try to balance your desire to help others and ‘being the support you wish you had had’ with your own needs and recognise when you are hitting your limits.
  • Think about ways to help you switch off sometimes – this might be not
    having your work emails on your phone, or making sure you physically
    turn off your laptop at the end of the day.
  • Try and find your own peer support networks of other rare leaders who
    understand the challenges and the joy of supporting a rare community.
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.

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’.

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

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

You can find out more about mental health and rare conditions by listening to the Rareminds podcast.
A big thank you to Rareminds for writing this blog, offering valuable advice and tips to support mental health and wellbeing,

For more guidance, explore our ‘supporting mental health‘ course available on the Resources Hub.

Listen to our podcast episode with Rareminds

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