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24th Feb 2022

Is it time for endometriosis to be classed as a disability?

Katy Brennan

“Greater awareness of the disease would go some way towards endometriosis being taken more seriously.”

Endometriosis can be a debilitating disease that drastically alters the lives of those who suffer from it.

For some, the pain caused by the illness can be extremely limiting, meaning they can’t carry out the same actions – particularly in the workplace – that others can.  Recent research shows that many women have even felt the need to leave the workplace.

Currently, one in ten women worldwide suffer from the condition.

Last month, campaigners in the UK called for the condition to be classed as a disability in certain cases. The topic was discussed during a debate on supporting people with endometriosis in the workplace at Westminster Hall.

And while it was made clear that not every woman who deals with the condition finds it affects their working lives, many do.

With more and more women speaking out about their struggles and the profound impact endometriosis has on their quality of life – is it time for something to change?

Here in Ireland, the illness is not treated as a disability but according to the Endometriosis Association of Ireland (EAI), it should be.

Clodagh Lynam, Chair of the EAI, says the recognition of endometriosis as a disability would be make things a lot easier for some of the women who deal with it.

“Symptoms of endometriosis, such as chronic pain and chronic fatigue, can cause mild to severe disability in those who have the disease,” she explains.

“Currently it’s very difficult for an individual to make the case that they are disabled and incapable of work, or that they need reasonable accommodation at work.

“So recognition as a potential disability would make the process of applying for disability payments or reasonable accommodation at work much, much easier and more straightforward.”

It can be hard to label endometriosis – and other conditions like it – as a disability because it has varying impacts on peoples’ lives.

“It would need to be assessed on a case-by-case basis,” Clodagh says. “But, with proper guidelines, it would be a smoother, less stressful and potentially less expensive process.”

Guidelines for assessing whether or not a person’s endometriosis would be considered a disability should be “drafted by a medical specialist, the EAI and a legal adviser”.

She continues: “Again, recognition of the disease as a potential disability would make the process more straightforward for everyone involved.

“Greater awareness of the disease, its symptoms, age of onset and the impact on a person’s life, both personal and at work, would go some way towards endometriosis being taken more seriously.

“Currently, people are waiting too long for a diagnosis, which is due to a number of factors, including lack of awareness and understanding of the disease among the general public – but also among the medical profession.”

Clodagh also argues that further training should be provided for GPs here in Ireland and that more endometriosis specialists are needed – particularly when it comes to treatment.

“Endometriosis surgery is a very specialised practice, and should be carried out by a gynaecologist who is an endometriosis specialist.

Centres of excellence are needed, where there is a multi-disciplinary team to treat this disease, which is complex and can involve many organs.”

You can find more information here.