Estimated reading time: 2 minutesLiving 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 10 pm (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 travelers 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. Our live Zoom monthly meetings are another way to get questions answered and feel part of a supportive network. Hosting these events is 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.
Jeannie Di Bon is a movement therapist, educator and author specializing in hypermobility, Ehlers-Danlos Syndrome and chronic pain. She is the founder of The Zebra Club app and the creator of the Integral Movement Method.
6 Comments
Moment Julie - 30th May 2022
Fatigue happens as quick as the flick of a light switch. Difficult when you look OK and wonder if people think you just don’t have much stamina. 🤔
Jeannie Di Bon - 6th June 2022
Yes, totally agree. It is a very difficult aspect to manage.
Cynthia Diehl - 20th May 2022
This article was really on spot for me. I am tired of explaining what actually is wrong with me. If I try to explain, I see the confusion in their eyes when I say I have HSD. If you say your hypermobile they don’t understand what that is. Then you end up trying to explain it but still feel like they think you are making this up. Do people not understand that having a chronic health situation for many years now doesn’t go away. I do have good days, weeks and even months which I then appear normal but then I slide back down into the pain stage and walk bad and need my cane. No cure, no medication just personal determination to keep plugging along.
My total feelings on this is be kind and don’t ask intrusive questions. Show compassion to someone who you can see has physical struggles.
Jeannie Di Bon - 23rd May 2022
Thank you very much for sharing your story. I totally understand how difficult it can be. Yes compassion to others and ourselves is so key.
Ian willett - 20th May 2022
This is another lovely piece Jeannie. It so true. The Zebra Club community has also given back some of the confidence I didn’t realise I had lost. I signed up for the excerise/movement but the community is the unexpected bonus.
Jeannie Di Bon - 23rd May 2022
Thank you Ian. It is so great having you in The Zebra Club community with your positive energy.