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Jeannie is sitting on a Pilates exercise mat

Living with Ehlers-Danlos – a life in two halves

Like many of us, I used to see my life in two halves.

Pre motherhood, I lived with symptoms on a daily basis like muscular pain, daily migraines, digestive issues (diagnosed as IBS aged 12). I thought everyone had issues every day. But I held a full-time job in Human Resources, studied at university after a full day at work for my Master’s degree and arrived home at 10pm at night. I’d get up the next day and do it all again. Looking back, I can only imagine doing this lifestyle.
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After my second pregnancy, I’d lost all my pregnancy weight so quickly doctors thought I was seriously ill. But I guess I was running on high anxiety state. This is when my other life starts. Chronic fatigue kicked in and robbed me of quality time with my boys. I was just so exhausted and felt so guilty about it all. I was advised to take up Pilates by a physiotherapist in 2007 – he said I was ‘handing off my joints with zero stability’. So I tried it and loved it. I trained to be a Pilates teacher soon after and my body hurt so much. I would push myself to try all the exercises we were supposed to be able to teach. I wasn’t listening to the warning signs. Pneumonias followed and chronic pain took hold.

But I came back from it. I think I’m now in my third phase of life. I am so grateful to have worked on my nervous system, calming it down through breathwork and movement practice. I am now pain-free and helping others find their next phase of their journey. Exercise can be tailored to suit you. It doesn’t have to be scary at all. You don’t have to push through the pain to get results. I learnt that the hard way. It rarely works. When you live with a chronic condition, our nervous systems need gentle attention and care.

I guess my message is – please don’t give up hope. No matter how dark and lonely this condition can be, small steps will help. It took 35 years to find out I had hEDS. A lot of heartache and pain along the way. I want to make that journey easier for other people.

4 Comments
  • Patricia McDonald
    Posted at 16:10h, 25 January Reply

    Thank you for posting this. I had been on a leave from work for almost a year. I qualified for Social Security disability just last week. I’ve used your programs, though not consistently. I often wonder how people can have pain to the degree I do and then suddenly they don’t. I’ve done physical therapy, I’ve been to several doctors. I have so many ailments it’s hard to even walk. Give me hope.

    • Jeannie Di Bon
      Posted at 15:08h, 26 January Reply

      Thank you for your comment and sorry to hear you are struggling. I will continue to put free resources on my social media channels, my blogs and YouTube. I do hope these are useful for you.

  • Michele Mathieu
    Posted at 17:04h, 06 April Reply

    HI there, so once to see others with this same condition/disease. I have a hard time writing “disease” partly because I just don’t want to believe it is anything like that. I am looking for some advice on finding an exercise regiment that is good for someone with EDS. I have tried yoga but seems counterintuitive given most poses I can easily do but also not great for my already elastic joints. You mention doing Pilates but found it was doing more harm than good? I have been an active participant at the gym for a long time now, but I find I am in such pain after my workouts to the point I can barely get myself up the stairs. Mostly knee pain and in my hips. Seems new joints start to hurt and it scares be a great deal. Recently my thumbs hurt which makes cycling a problem. ughhhh.

    Any help is appreciated.

    • Jeannie Di Bon
      Posted at 21:34h, 07 April Reply

      I would take a look at my YouTube channel which has a wide range of advice and classes for EDS and hypermobility. It is my modified Pilates work – the Integral Movement Method. Hope this is useful.

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