“This week is Invisible Illness Week. The Ehlers-Danlos Support UK motto is ‘making our invisible visible’, but this has a multitude of meanings.
There are 7 different types of Ehlers-Danlos syndrome, but it can often feel that the condition is an invisible one in wider society and within the medical profession. How many times have you had to explain to someone what EDS stands for, or what your condition is to doctors, A&E staff, colleagues or friends? It is vital that we work together to raise awareness of Ehlers-Danlos syndrome and speed up access to care, consistency of treatment plans and support for patients. Knowledge and understanding of all types of EDS within the medical profession, would go a great way to ensuring patients are safe, receive the correct method of medical investigation for their type of EDS, and have confidence in their care. EDS UK are working hard with our medical advisory panel to help to increase awareness at the level it is needed.
For many in the community, their EDS is invisible and their struggle with pain, fatigue, gastro issues and more can be made even more difficult by the fact that others cannot understand it. The limitations that EDS can place on us are not easily understood by others who cannot see beyond a one-dimensional view of illness. It can be difficult for patients of all ages, who perhaps to others ‘look fine’, but struggle with their EDS at home, work, in school, in social situations or even to stand on their daily commute home. Having to justify why you need to take that seat on the bus, or explain to your friends why you can’t make it this evening, can be tiring and upsetting for many. This is where we need to work together to change not only awareness of EDS and invisible conditions, but challenge attitudes towards disability and understanding.
The nature of EDS can mean that we sometimes have visible symptoms; one day fatigue and dislocations could mean we require supports, crutches, braces or a wheelchair, where a day or two later this isn’t the case. The fluctuating nature of EDS can be difficult for others to understand and take seriously. With vascular EDS, the serious nature of the condition can be difficult for doctors, paramedics and medical professionals to understand unless bruising or bleeding are obvious, and they have knowledge of how to carefully manage patients.
Not all types of EDS are invisible and can have very visible symptoms. However, the multi-systemic nature of the condition can be invisible due to lack of research, knowledge and awareness, and this can have a detrimental impact on treatment, care and support for patients.
The battle is ongoing, and paved with obstacles, but together we can achieve great things. Please join EDS UK in making our invisible visible, for this week and the next. Together we can make a difference. For more information about joining the charity, finding support, medical information or getting involved, please visit www.ehlers-danlos.org
Share this post, share your experiences and each tell 10 people about EDS. Image the difference you can make?”