ME/CFS Awareness Week; What ME/CFS awareness means to me and how that translates into attending our team 10 year anniversary event

There is a certain synchronicity about the timing of the Vitality360 team day celebrating our ten-year anniversary, which coincides with ME/CFS Awareness Week 2022. In fact, I will be travelling to the venue on ME Awareness Day! It has led me to think about what ME/CFS Awareness means to me as an individual and how that translates into my daily life. 

I count myself as extremely lucky to have ‘found’ Vitality360. I live in a part of the country that had limited NHS provision when I was first diagnosed and now has no NHS provision at all. Like many people I had to find my own support and gain my own understanding of how to improve my symptoms and minimise the ‘boom and bust’ pattern I lived with – and with no way of checking how appropriate/beneficial the approaches I was taking were, this led to varying degrees of success. My own lack of understanding meant that it was very difficult for me to help those around me to increase their awareness. And this lack of awareness made it very difficult for them to know how to best support me.  I was working, but barely managing to do anything else and with regular periods of sickness. It wasn’t good for me and it wasn’t good for my employer.  They knew that I’d been diagnosed with ME/CFS, and I had given them information about supporting employees with the condition but despite their best intentions they weren’t really aware.

As I say, I am extremely lucky to have found myself working for Vitality360. Our founder Jessica Bavinton, and Executive Manager, Beverly Knops are passionate about providing evidence-based support to people with ME/CFS. This passion doesn’t only apply to our clients but also to our team, with their extensive knowledge and awareness creating a culture of wellbeing throughout the organisation.

Our 10th anniversary team day is a perfect example of what this awareness actually means in practice. The whole weekend event has been planned to be as inclusive as possible. The days have been organised not only with plenty of breaks but also with free time planned in, we have been given the opportunity to stay the night before and after so that people with a long journey can pace themselves. The activities are balanced with gentle physical activity, and we have been asked about any needs or challenges we might have. Best of all because we have all been asked this, those of us with ME/CFS don’t have to feel different or awkward.

So to me, ME/CFS awareness means not needing to explain that even on a good day I don’t feel fully well, that the adjustments that enable me to work can be discussed and reviewed in an open and honest way so that both my needs and the business needs can be met and that my contribution to the team and our clients is recognised. That I still have skills and experience, even if I can’t work full time and need to manage my energy carefully.

I hope you’ve had a Happy ME/CFS Awareness week!