Isobel Knight

Indeed it is perfectly natural for you to feel angry and upset about the fact you have a chronic, persistent and permanent health condition that is both life-long and often seemingly invisible to others.

In the performing arts, hypermobility can be desirable and many dancers, gymnasts, acrobats and musician are drawn to their art based upon their effortless range of movement.

It will always be difficult for those of us who live with unseen medical conditions, especially EDS-HT where the individual looks apparently healthy and well. It is hard to continue deflecting insensitive comments and to have to ‘convince’ someone that you are in pain.

Many recall being taken by their own parents to GP's and other medical professionals where the diverse and non-specific symptoms complained about were 'played down' in significance or worse still discounted as 'attention seeking' or probable 'over-anxious parenting'.

The most difficult thing for me is not doing loads of stuff when I feel better than normal.

The hot wheat bags help a lot and I listen to music or watch TV to ignore the pain.

During the middle of the meeting, I felt a sudden surge of heat up to my brain followed by a change in pulse rate and temperature and accompanied by immediate brain-fogging and feeling as though I had been put on "pause".

A couple of years ago I went to Legoland with a friend of mine and her mother. By the time we had walked from the car park to the entrance I was knackered and done for the day.

I sometimes find it hard to distinguish between pain that is alerting me to a new problem and pain that is there routinely.