I won’t be the first or last person to blog about this. I have wanted to write about it for a long time. Talking about illness at work can be hard and often people feel judged when it comes to any kind of time taken off due to illness. I started this post expecting to be in recovery from my second operation inside 18months for Endometriosis, I have since been messed around by the Hospital and am writing this for my own sanity sort of, as today has been a low day.
I hope this posts helps people in a similar position to me see they are not alone and that they shouldn’t beat themselves up for feeling as though life is a struggle some days.
I still find it funny how it comes up as a spelling mistake on a lot of the sites I use each day. IT IS A THING!
So you can click on the link in the title there to look for yourself. I won’t go into all the gross details but you should know that it causes me pain and fatigue daily. Some days I just have pain other days I find it difficult to walk it’s so bad. It also have a psychological impact that comes with any chronic pain condition. It took me two years to be referred to a doctor I have so far had one surgery with another on the way and possibility of more in the future. Some women are covered in it and feel no symptoms, others only have a little bit of it but have a terrible quality of life and pain that doesn’t seem to add up.
To address some common reactions or questions I get about it:
- No paracetamol and ibuprofen aren’t always enough
- Yes I know exercise will help bit it’s too painful to even walk or do gentle yoga some days
- No I don’t want to talk about fertility, I’m not there in my life yet
- No that doesn’t mean I have a heart of stone, neither does it mean I won’t get upset if people drop “awww, are you broody?” into conversation.
- Yes it is common, as many as 1 in 10 women have it which puts it up there with breast cancer and diabetes
- No it is not considered a disability I don’t get benefits or special considerations at work (but my colleagues and boss are understanding of it)
- No it won’t just “get better” and no there isn’t a cure
- Yes some days I will seem fine and others I won’t be able to get out of bed – that doesn’t make me weak, lazy or a faker.
- By all means, if you’re friends with me tell me if you’re concerned you may have it but if you do think you have it – go to the doctor
- OK, so you have a friend and they had it and it “wasn’t that bad” … everyone’s body is different.
Those are but a few…
As you can probably tell, I am am open about this but defensive about it as well. I don’t mind talking about it but it is a topic that frustrates, angers and depresses me.
Why so defensive?
So aside from it having radically changed my life there is a huge sense of frustration about a number of aspects of endometriosis
- Average time taken to diagnose is 7 years
- Average age of diagnosis is a lot older than I am which means that some women end up discovering it at the worst time such as when trying to conceive or by the time it is found their organs are stuck together by it
- In my experience doctors don’t always listen and aren’t always sympathetic about it*. It’s routes are in hysteria and often a “stop making a fuss” attitudes is taken towards this.
- Sometimes I am able to cover it up, bury it and get on with life and other times I can’t. I have days when I feel like crying at my desk but I won’t let it beat me so I don’t. This means everything that gets bottled up can sometimes come out as a rant or in a way I don’t want it to. I even get snappy with my boyfriend who is in fact a massive source of support to me…
- We’re in 2014 and medicine hasn’t evolved enough to deal with this. There isn’t enough funding or research being done into it in the UK and we’re meant to have one of the best healthcare systems
- Doctors and surgeons, although learned, intelligent, capable people can often treat you like you’re a number not a human.
*Please note I have friends who are doctors and I am not an “NHS basher” I am grateful for the care I have received it just felt like such an uphill struggle to even get a diagnosis but I am one of the luckier ones.
Steps I have taken to feel better:
- Support groups both online and in person
- I went to a pain management session that was really useful
A call to action
2 requests to anyone who reads this:
Educate yourself and other people about this. Whether that’s by clicking on the link in the title above, googling it or being more open and honest about periods and female anatomy.
And/or Donate to Endometriosis UK – OK so it might not lead to a cure but the men and women who have been part of support groups I have attended are volunteers and they are an amazing source of support and knowledge. It’s great to know you’re not alone.