Useful Article About Joint Hypermobility/EDS


Many people have flexible or loose joints. They’re the people, maybe like you, who did gymnastics or ballet when they were young and are “good” at yoga. Their joints move farther and more easily than most people’s joints, so they often can do tricks like bending their thumbs forward until they touch their fore-arms. Sometimes these people are called “double-jointed,” and some may even have dislocated or popped their joints out of the socket. The medical term for joints that move too far ishypermobility, and the word for joints that are tooloose and move too easily islaxity…read more

More Than Meets The Eye – Campaign for Invisible Disabilities Awareness


“After my post on using accessible toilets with an invisible disability went viral with over 2 million views, I knew I had to harness this amazing audience and do something good with it and so after spending the week talking to people with disabilities all over the world and also Disability Charity Scope, I am over the moon to launch More Than Meets The Eye, a campaign for invisible disability awareness.”

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Finding a Good Doctor


I often get asked ‘how do I find a good specialist?’ There are several ways to find one, but it is a lot easier if you already have a diagnosis, so I will start with what to do when you do not have one yet.

If you have been to countless GP’s and specialists and they have not been able to come up with a useful diagnosis yet there are a few things you can start with. You can start by joining a few general chronic illness forums (see the link below) and read other people’s stories and see if you have something in common (that is partly how I got diagnosed after being ill for a long time) and you can ask questions. Or you can Google your synptoms to see if you can find something familiar, but be careful, a lot of illnesses have similar symptoms and you could get overwhelmed! My advice is to be very sceptical. But once you have a slight idea of what your illness could be, you could join online forums or support groups and check it out more in detail. These groups and forums often can help you find a good specialist, they have reviews posted on doctors and links to medical articles as well. You can find them on Facebook but there are also non-Facebook groups and forums.

For those who already have a diagnosis, this is a good web site to check out: But You Don’t Look Sick

Good luck 🙂



Today I bumped into this blog post, I think it is well written and worth checking out

“Taboos don’t help us. Taboos lead to silence and silence means we feel alone. Being frightened or too embarrassed, to express how we feel, or to share our experiences leads to an unnecessary burden. One which we could avoid or minimise through openness. Chronic illness is hard and not just in the physical sense. The emotional aspects of a life of chronic pain or chronic ill health are frequently underestimated. Medical practitioners rarely discuss this aspect with their patients. And patients are in turn often reluctant to discuss it with their doctors.”

Read more: Taboos