We know that living with MPS, Fabry or a related disease can feel daunting and you may feel lonely and isolated. We all feel lonely from time to time, but our descriptions of loneliness can vary. A common description of loneliness by the mental health charity Mind is: "the feeling we get when our need for rewarding social contact and relationships is not met."
Our community has been significantly affected by the COVID-19 pandemic, including long periods of lockdown and shielding. As a consequence, we want to help build connections and reduce feelings of isolation for anyone living with MPS, Fabry or a related disease. In 2021, we received the first installment of our three-year grant of £195,000 from the National Lottery Community Fund - Reaching Communities to help us achieve our plans. Earlier this year, we received a £195,000 grant from the National Lottery Community Fund - Reaching Communities to help us achieve our plans.
Building Connections Survey
Last summer, we asked our members to complete our first Building Connections survey. We will repeat this each year of the grant to evaluate the difference our support makes.
One of the questions that we asked in the survey was 'What things do you do if you are feeling lonely?'. We made this an open question so that we could get a deeper insight into our members' current thoughts and feelings and compare them over the three-year period.
We received some great responses to this question and have put together some top tips for how to combat loneliness.
Top tips for combatting loneliness
Take a walk and get some fresh air Taking a walk is often taken for granted, but we all feel a lot better after getting outside and getting some fresh air. If you're not very active but are able to walk, increase your walking distance gradually. If you're not active because of a medical condition, get advice on exercising with a disability.
Call or see friends or family for a catch-up You might do this more than you realise, but making time for the special people in your life can significantly improve your mood and help you to feel less lonely. At the MPS Society, we offer a befriending service where affected members offer personal support as they know how isolating it can feel to be affected by a rare disease. Alternatively, if you're aged between 15-30, our Rare Voices group gives you the chance to look at ways that help young people to live their life to their full potential and how the MPS Society can work with you to provide it, in a way that suits you.
Do something creative Whether it's arts and crafts, knitting, painting or writing a poem, being creative gives you a greater sense of freedom. Just remember that creativity isn't about making something 'perfect' and the more you explore different hobbies, the better at them you will become.
Read your favourite book or magazine There's a reason why you have a favourite book or magazine. Try to remember why you love it so much. Maybe it's because it's easy to read or it helps you take your mind off everyday life. Studies have shown that reading 30 minutes a day lowered blood pressure, heart rate and feelings of psychological distress (such as loneliness) just as effectively as yoga did.
Enjoy screen time and watch your favourite television show or programme Despite what you might have heard about screen time, it does not have to be passive. According to The Guardian, children can make video clips, music, podcasts or learn to code and this is the same for adults. Watching your favourite television show or programme will help you to feel less lonely as it's familiar and many people prefer to have background noise. Just be mindful that if screen time displaces a health activity such as sleep or regular outdoor exercise, then it can be harmful.
Play or listen to music It has been proven that when you hear music to your liking, the brain actually releases a chemical called dopamine that has positive effects on mood and can provide comfort. Music therapy has also been used to help enhance communication, coping, and expression of feelings such as fear, loneliness, and anger in people who have a serious illness.
Practice mindfulness Mindfulness is a term that is everywhere, but many of us have a different definition of the term. Professor Mark Williams, former director of the Oxford Mindfulness Centre, says that mindfulness means knowing directly what is going on inside and outside ourselves, moment by moment (NHS UK). Paying more attention to your own thoughts and feelings can improve your mental wellbeing. If you're unsure about how to practice mindfulness, why not download the Headspace app or watch our mental health and wellbeing videos? Also, we run online mindfulness courses regularly for MPS parents and carers and those with Fabry that you might be interested in.
Join an online support group If you have tried all of the tips above and are still feeling lonely, why not join an online support group such as our Rare Voices group for young people in our community? ? These groups can help you to build your self-confidence and may lead you to become more in control of your life. We have a number of online support workshops that we run regularly for our members and have recently launched our counselling service with Rareminds for over 18s.
If you are feeling lonely and are struggling, please know that you are not alone and we are here for you. Our Support and Advocacy team are always at the end of the phone to listen to your queries. You can contact them at: firstname.lastname@example.org or by calling 0345 389 9901.