Members' Monday - Heather's Story with Ehlers-Danlos & her Mindset Journey

This is a super inspiring story from Heather about her own health journey and how changing her mindset has helped. Thank you for sharing! x


From the moment I was born my parents were told I was poorly. They had no clue what was wrong, but I was floppy and just not right. I was sent home with them telling my mum she must have caught a virus when pregnant with me and to see how I developed. When I was not walking properly at aged 5,instead dragging myself on the floor, or brief times walking on tiptoes whilst holding onto things, the journey of finding out what was going on began in earnest. I had a very medicalised childhood, being poked and prodded and tested and told I was weak and ill. I had no muscle tone, was constantly in pain, my bowels and bladder were not working properly; I had debilitating headaches and was generally unwell. The only thing as a child that gave me any comfort were a pair of old velvet curtains I’d have over me and rub my legs on to distract me from my pain.

All throughout my teens I was poorly. I dislocated my joints from turning over in bed, from walking a few steps, or in the case of my jaw, from eating basic foods. More testing and more prodding and more being told I was weak and poorly. The physiotherapist I saw every week from being 5 until 13 even joked and called my condition “heather disease” as we still had no clue what it was. In my early 20s I was diagnosed with Ehlers Danlos syndrome by a geneticist. By this time, I had had numerous surgeries, hospital visits and stays and had delivered two sons very prematurely who passed away.


They told me it was because of my condition which at that time still didn’t have a name. I also had various gynae issues from horrendous periods to debilitating pain from cysts. Since diagnosis I have had many more surgeries, and been in hospital many times. I have been given tens of other diagnosis that are co-morbid conditions and often caused by the Ehlers Danlos. I had two further pregnancies which were, quite frankly, brutal. Both included surgeries and 6 months bed rest and nearly lost both my children I have now got at home.


I have spent time in wheelchairs where I can’t walk at all and other times on crutches wearing splints. I was laid in bed for most of my life, in pain, reliant on pain killers and other people. In 2016 I came off all my pain meds. I quickly realised, for myself, I had become reliant on them emotionally as well as medically. Years of my body “hating me” had left me with a long list of mental health diagnosis too. Not least PTSD from the trauma of my eldest’s children’s births and subsequent deaths. I knew I couldn’t live my life the same but just without meds.


In 2017, I got in touch with a personal trainer and asked for help. I have worked with him since and he’s essential to me having built strength physically. However, everytime I did anything I would have in the back of my mind the constant messages of my whole life. I am weak, I am broken, there is something wrong with me, and I will never be well or fit and healthy. This was my greatest battle. As soon as I started to look into mindset my life changed 100 fold. I soaked in anything I could find; books, YouTube, TV, anything that spoke about the mind being the strongest part of our body. It was uncomfortable for me to think I’d had perhaps been buying into my illness. Am I saying if I tell myself I could walk my muscle suddenly got strong and bam, I was up? No not at all. But I started to change the narrative from “I am broken” to “I can’t do that right now, what small thing can I do to help me get there?”


When my pain was bad I meditated. I looked at how my body is amazing to do what it does with a genetic defect and thanked it. When I got the demon periods that put me into bed and the news in 2017 I couldn’t have the baby my partner and I wanted I found gratitude in the joys I had, I let myself cry and drank tea. I didn’t let it define me. It took time. Years. My life now constantly amazes me. In 2018 I did a very small aquathon. Did I do it well? Absolutely not. But my mum greeting me at the end crying and telling anyone who would listen I hadn’t even been walking properly most of my life was the greatest prize.


I now weight train, hike, and canicross and will try most things if I fancy it. I don’t ever think can I do this, I think do I want to? Do I still live in awful pain? Yes. Do I still dislocate all the time? Yes (in fact I had a horrid one eating Sunday dinner this week). Do I still have days where my fatigue and generally feeling ill knocks me off my feet? Absolutely. I can’t think myself out of a genetic fault in my DNA. But I can reframe how I think about it and myself. I accept it’s there, I acknowledge it’s hard. And then I thank my body for keeping me alive and being a vehicle for meeting the people I love and that love me. I know years ago I would in all likelihood have been furious if anyone had told me I could change the way I think to change my life. But it’s what I did. Every time I move forward in my thinking and self believe and shed a tiny bit more of the thoughts of being weak and useless I can walk better, run further or lift something that bit heavier. Nowadays I am not my condition, I have a condition.



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