EDS and HSD are complex syndromes affecting many different parts and systems of the body at once. Despite this, they are often invisible. In addition to problems associated with hypermobility, those affected may also have skin which damages easily, bruises and is slow to heal, or alternatively can be thick and velvety. Different symptoms and their severity vary considerably from person to person and are unique, even in the same type of EDS and within the same family. Some other conditions seem to be more common in people compared to the general population but we can’t say for certain that they are linked.
Individuals with HSD or some types of EDS can experience symptoms related to the abnormal function of the autonomic (involuntary or automatic) nervous system. The term autonomic dysfunction is used. It is not yet clear how HSD or EDS and autonomic dysfunction are linked. In some people with autonomic dysfunction, symptoms come on when they are upright and are mostly relieved by lying down. This is called orthostatic intolerance or postural orthostatic intolerance (PoTS). Symptoms of PoTS include palpitations (a sensation of your heart pounding in your chest), lightheadedness or dizziness, sweating, fainting, fatigue and headaches. They can also affect the gut (where nausea, diarrhoea, constipation, bloating, abdominal pain and vomiting can be experienced), concentration and vision (excessive glare, blurred or tunnel vision).
There is evidence of an association between hypermobility and anxiety, and hypermobility and neurodiversity, but the relationship is not yet fully understood.
Key facts
- EDS and HSD are lifelong conditions that affect connective tissue throughout the body.
- Hypermobility is quite common in the general population.
- Symptoms vary significantly between people.
- Many people look well despite experiencing significant symptoms and may cause problems for employees at work and these are likely to occur before a diagnosis has been given.
- Particularly severe symptoms may affect a persons attendance, as will the frequent medical appointments which often come with having the conditions.
- Research has shown that people who are hypermobile are more likely to be anxious than non-hypermobile people
- Difficulties often occur before a diagnosis has been confirmed.
- Fatigue, pain and mobility challenges can affect work and attendance.
- Reasonable adjustments can help employees participate fully in the workplace.
- Employees may require support from multiple professionals and services.
- People with EDS or HSD often fidget and need to move about
What employers need to know
It’s the law.
The Equality Act and Health and Safety legislation require employers to take a pro-active approach to Reasonable Adjustments. Ignorance is not a defence in legal cases – you need to show how you identified someone’s needs and demonstrate the adjustments you made to accommodate them.
If problems only come to light when a dispute arises then this demonstrates that you needed to take a more positive approach to identifying need and exploring reasonable adjustments.
What about the cost of the adjustments?
Many recommendations can be made at no cost – changes to work patterns, moving a desk or chair, swapping keyboards and so on. Some may require low cost equipment, such as a specialist mouse, a document holder or coloured sheets to help someone with dyslexia.
In some cases specialist equipment may be required such as computer software, specialist hardware or desks or chairs.
Most employers do not need specialist medical knowledge.
The most important role of employers is to:
- recognise the barriers to the employee working at full capacity
- understand how symptoms may affect work
- make appropriate adjustments
- work collaboratively with the employee
We have a freephone adviceline open Tuesdays and Fridays 9.30am – 3.30pm which employers can contact for individual help and advice. For more information about this please go here. We are also able to present (via Zoom) information at a work bitesize learning session if you would like us to.
It can be tempting to dismiss reports of pain from an employee because pain does not always have visible external signs. Pain is extremely complex and can have sensory and physical causes. Being disbelieved can lead to frustration, discourage reporting of pain and undermine trust and the communication needed to successfully navigate supporting the employee.
Pacing
Pacing is an important part of the self-management of EDS and HSD and can help with fatigue and pain. Effective pacing helps to avoid a boom and bust cycle of energy and fatigue and can enable the employee to do more. Various techniques can be used.
Clothing
Some employees may need some flexibility in what they are allowed to wear for work if there is a dress policy. For example, braces worn to stabilise joints may be difficult to fit under trousers or shirts; boots rather than shoes may be needed to support unstable ankle joints. Some people may need to wear orthotics (insoles) in their shoes.
Supportive or compression garments (worn under clothes) are also increasingly being used by people with EDS and HSD. These are useful as they seem to help to improve the sense of where the limbs are in space (proprioception) and may help with other symptoms related to blood circulation.
