With EDS and HSD Awareness Month upon us, it feels like a fitting time to share one or two posts written from my personal experience of having lived with Ehlers Danlos Syndrome all my life yet not always having known it because other people around me also didn’t have a clue. You could ask, well … Continue reading Missed signs of Ehlers Danlos during childhood
A recent experience I had, as someone living with invisible disabilities, including its positive outcome, just goes to show the importance of speaking up for your needs, of feeding back when things don’t work out and of urging venues and organisers to try harder in the future. Some, if not all, will listen and, in time, things should get better. It will also take a lot more education of the general public for things to really improve, which is something I hope we are all prepared to work towards, as we each do whenever we stand up for our challenges or dare to speak out and educate people regarding what isn’t so immediately obvious about our disability experience, utterly life-encroaching though it may be to us. We have every right to be able to expect to take part in, and enjoy, experiences that able bodied people are able to take for granted and, if it takes a few tweaks and accommodations to make that happen, then we should be pushing for those until we get them. Yes its very hard to do, and we need to pick the right time (for us) to be more vocal as it can take a lot out of us when we are already struggling but we also have to think about contributing, when we can, towards making our invisibility more visible, in all aspects of life until, little by little, people start to see us more clearly.
The way human society is devised, the very foundation stones of its connectivity networks, is based on us all having relatable, sharable situations and people being able to recognise when another person is in strife. When you have chronic conditions that not only isolate you from other people due to an equally chronic lack of spoons, also causing you to be misunderstood by other people (as people tend to assume you are making up lame excuses when they can’t see the energy deficits you are having to work with!) then having the additional pitfall of nobody being able to recognise that you are ill, because your disabilities are hidden from sight, even when you finally come out of the woodwork, is the final sting in the tail.
Living whole 