This was a question I was asked on a web form recently.
It was a required field, and the only answers were “yes” or “no” so I couldn’t skip it. It brought up a wider question in my mind about how I and others percieve my illness and if I or other people would class it as a disability.
It’s such a massive grey area. Perhaps that’s why it’s continually left for us to personally decide rather than a blanket decision being given in endometriosis’ case.
Am I disabled?
I don’t feel entirely comfortable with the term “disability” for my personal circumstances, even though the classifcation probably exists to protect me. This is because no one has clarified if I can use it, so any situation where I do so leaves me feeling uncomfortable.
I know a lot of other women with endometriosis feel the same way about this. With others feeling that endometriosis should automatically be classified as a disability.
Without precise guidance it’s left to us to pick and choose the right approach. As I have to on occasion.
The definition under UK law
Clarity on this issue isn’t completely forthcoming. In the UK the definition of disability under the Equality Act 2010 is:
If you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.
In UK law only three named conditions are automatically protected and those are Cancer, HIV and Multiple Sclerosis.
It goes on to specify what “substantial” and “long-term” mean in some detail. While would almost certainly be covered in the “long-term” category (with endometriosis being incurable and all). I suspect it is the “substantial” wording that casts the most doubt into the “endometriosis as a disability” debate.
Intermittent illnesses are also afforded protection under the Equality Act 2010, so the thing that needs to be understood in each personal case is how much endometriosis effects a woman’s quality of life. One big example is her ability to work to maintain independence and security.
Some would argue that endometriosis is a disability without question. I used to feel the same way, now I’ve come to realise that it just isn’t that simple in all cases.
I think Endometriosis UK put it very well in their statement on disability:
The Equality Act does not provide a definitive list of conditions covered by the act, this is because there is wide recognition that there are many illnesses that may be disabling for some individuals, but not disabling for all. In many ways, this is a positive aspect of the act as it allows each individual to be considered based on their own personal experience with the condition. The effects of endometriosis can be so wide-ranging and varied that this is very important.
I don’t fit perfectly into either category
Endometriosis has a massive day-to-day impact on my life, and I freely admit that I lie happily on the line between disabled and not disabled most days. Yes I am able to work full-time, but my employer has also made reasonable adjustments for my capacity to work under the Equality Act. Yes I am able to cycle to work, but I do so on a specialised electric bike which helps me to manage my pain, while never overdoing activity.
I am managing my illness, but there are also a vast list of things I cannot do or do not feel able to do, because of ongoing pain and in life and work that puts me at a distinct disadvantage compared to other people. There’s no escaping that.
It’s an issue for those of us with an invisible illness like endometriosis. Sometimes the extra protection from disability would be nice. Other days (with a lot of hard work) I manage with my illness and don’t want to be singled out (as I already am) with yet another label. It’s not as clear cut for someone like me, and I think the Equality Act affords me the right level of protection right now.
Even if I was fully acknowledged as disabled officially (as opposed to my own definition where I am completely guessing), the only advantage it would give me right now (as I have no assistance with travel, living expenses or benefits) would be the confidence to ask for help more frequently, and perhaps for some people living with endometriosis that’s all that’s wanted. A little acknowledgement of the severity and far-reaching implications of symptoms.
I’ve managed up until now with the phrase “chronically ill” if someone asks me. I am comfortable using that phase in most situations.
So what did I answer?
Personally I leave it to the context of the situation in which I’m being asked. In this instance I was subscribing to a cycling ride website and illness is something I should probably disclose in that instance, since it involves finding other people to cycle with and I might experience some difficulty out on the road.
I answered yes.
I noted with interest though my choice was not disclosed on my public profile on the site so I am being afforded some protection under the Equality Act it seems, and that’s the beauty of the law as it stands. Even if it doesn’t detail my condition by name it’s already quietly working in my favour.