19 May 2022 The Lonely Chronic Illness Life
Living with a chronic illness can sometimes be lonely. It can be difficult for friends and family to really understand how we are feeling and why we don’t ‘get better’. It drives me crazy when people say ‘you just need a good night sleep’ – like it’s a miracle cure.
It’s hard to be social when you just want to go to bed at 10pm (or I prefer 9 pm). I get to a point when I can’t talk, smile or chat anymore – it’s like the curtains close and I’m done.
But we know who does ‘get us’. Fellow travellers on this chronic illness journey. The stress of not having to explain yourself, or your ‘weird’ habits and the relief at being accepted. These are aspects that really cannot be underestimated in our journey. These are powerful aspects in helping us navigate and manage daily life. And regain some of the life we ‘lost’.
I’ve seen amazing transformations for people with the right kind of support in place. No one should have to try to navigate alone – we all need a co-pilot. Many of us have amazing support networks and this is awesome. I think this is why EDS / HSD Awareness Month in May is such a great idea – it brings focus and a sense of community. You realise you are not alone.
I don’t think I appreciated this aspect quite as much as I do now. After creating, managing and hosting The Zebra Club for over two years now, I’m so encouraged by the support members give each other. Having someone to connect with online is a fantastic and easy tool. And our live Zoom monthly meetings are another way to get questions answered and feel part of a supportive network. Hosting these events are a favourite part of my job .
Someone said recently “just having someone explain to me clearly why my body does what it does has helped me so much”.
It’s never just about exercising. Yes, that’s an important and essential aspect – there is plenty of research to support the fact that we need to improve muscle tone, control and strength. Exercise needs to be appropriate for hypermobility too. But we do need more than that – we need a supportive community around us. That community may look different for each of us. Bring it all together and you have a powerful strategy . You can check out The Zebra Club for more info at www.thezebra.club.