Blogging Against Disablism Day 2014

I have taken part in Blogging Against Disableism Day on two previous occasions. My first is lost to the internet bin as I deleted that blog. Last year’s blog wasn’t long and it wasn’t detailed but I think it was very emotional. I spoke about how hard it is to live with a disability other people cannot see and so often deny exists. That still stands very true but given my diagnosis with endometriosis I have become even more aware, upset and passionate about this side of things. Sadly the fight goes on to get this disease recognised as a disability but I’m going to chance it and make my blog post today about it because I believe it should be. If I can’t stand up because of the pain in my body. If I can’t see straight because of pain and dizziness and blood loss. If I can hardly talk because of the pain then how is that not debilitating?

To be honest I think society’s casual ableism and attitude to disability is why it took me over a decade to get a proper endometriosis diagnosis and why the average sufferer takes seven. The most common symptoms of endometriosis are painful and irregular periods. Yet people who go through the menstrual cycle grow up being given mixed messages about the whole thing. People are either told they are weak and will end up curled up in a corner crying while eating chocolate or that they are weak if they don’t ‘Man Up’ and deal with it and carry on like nothing is happening. Basically, they are told they are weak when I think menstruating people are amazing. Our organs shed their inner linings and contract muscles so we can shove said lining out our genitals. I’m coming to see that as pretty badass personally. Thing is, that is just regular menstrual cycles that can be painful, emotional and generally not fun times. The result is if people grow up being told they are weak for speaking out when it hurts or weak for saying it does it creates a group of people that don’t speak out at all.

This is where it gets dangerous with a disease such as endometriosis. It takes seven years for most to get a diagnosis because they are told periods will regulate as you get older, don’t question it. It takes seven years because they are told everyone is in pain, take a painkiller and stop whining. It takes seven years because when someone can hardly move from the pain they don’t get help but get told to go run around the track field a few times. People are expected to suffer and to do it quietly. It takes seven years because though some realise the Pill will help they don’t go get it because they fear being labelled a slut. I had that last point in because I still think it is important. Society’s stigma over what can be a very effective treatment deters people from using it. That is important. That is serious.

The longer endometriosis goes untreated the longer people suffer and are in pain, the longer they don’t know when a period will come and get anxious about going places in white trousers or cancel plans at the pool just in case. The longer it goes untreated the more cysts form, the more scar tissue forms, the more time it has to ravage a person’s fertility chances. And a lot of it is because of the stigma surrounding this debilitating disease. It is like periods have a don’t ask don’t tell stigma around them. At school I had one of the better groups of friends. I say better in that we would ask for painkillers in front of all members of the group whether they had periods or not and everyone was willing to offer up their drink of the day to get the down. We rarely said the period word because that was taboo.

Disabilism comes from the parents not willing to let their cramping, crying, dizzy children go home and roll around in their beds cramping, crying and being dizzy while wrapped around a hot water bottle and wearing a heat pad. It is the mothers and fathers that when bravely approached by their child in pain tell them it is normal, everyone has that and pack them off with a 18p packet of paracetamol.

Children are not encouraged to think about, talk about or research the menstrual cycle in anything more than clinical detail. The disability that is endometrioses, recognised or not, is not something many have heard of. This culture where people are not encouraged to look up their symptoms and to talk about them and seek help because everyone should be healthy and normal and fabulous is dangerous. Without information telling them that certain symptoms may not be normal how can these children be expected to seek help? It took me years to realise the hip pain and general pains I felt outside of my actual bleedings were connected. Then there are all the other symptoms that endometriosis comes up with. I didn’t want to admit I didn’t have a regular cycle. Part of that was another disability in type one diabetes. I didn’t want people to think my control, or up and down control, was responsible for my cycle. I didn’t want to be labelled different, weird or more importantly a failure.

A society of shame holds many people back from answers to questions that keep them up at night. It holds them back from treatments that could make life easier. It holds them back from seeking out communities that understand and can help. It plain holds them back because we don’t ask and we don’t tell and we certainly don’t encourage questions. That is what I want to fight against, not just for endometriosis, but for all conditions whether they are mental, physical, seen or unseen or any combination of the above. I don’t want people to suffer in silence because society says they should. Society is wrong in the majority so as a minority I believe if we can speak out we should.

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One thought on “Blogging Against Disablism Day 2014

  1. wolfennacht says:

    Stigma is an awful, awful thing for so many diseases. I didn’t realize that it took endometriosis sufferers so long for a diagnosis; it took me seven years to get a lupus diagnosis, and in part that is because it’s such a systemic issue and different for every patient that doctors easily mistake it for other things – it’s called “the great imitator” in medical circles. But endometriosis… it seems to be as you say mainly the stigma that is the reason for such late diagnoses, and the fact that people won’t talk about periods even though so many people in the world get them! It’s great that any of us can speak out against the stigma of our diseases; if it helps even one person, then we’ve done a good job! I found with depression in particular, after suffering silently for so many years, actually going to the doctor and explaining it and then getting treatment was surprisingly easy! If only I had felt able to tell a doctor about it before, I would have been on treatment and seeing my psychologist at an early age when I needed it. Great post. x

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