The starting post for this website got me thinking about timings.
More specifically dates. I’ve been working on building websites since I was 14 years old – around the times my health problems first started. A total coincidence of course, but an interesting one nonetheless.
When it came to starting this site, I thought long and hard about what name to use when referring to myself. This was a problem I had back when I was 14 too, but for different reasons. Back when I was first learning HTML I was afraid to use my real name online as I was still a child.
Subsequently I have started several websites around my interests (most pertinently video games which I discuss at Pioneer Project), I do so with my real name – my full name, without shame. I am proud of my work.
Which brings me to Endohope
I mention this because such is the shame of suffering with endometriosis (an illness related heavily to the female reproductive cycle). I very nearly hid behind a moniker.
I’m ashamed to admit this, but to be honest a big part of the process of learning to live with this illness has been learning how to describe it to people, in terms they will understand, by using phrases that won’t embarrass them by proxy.
Because to be frank, describing how endometriosis causes me problems does mean using the following words:
uterus, womb, ovaries, reproductive cycle, pain
Of those words, the last one is the easiest one for most people to understand, so saying:
I suffer from chronic pain.
Is nice, easy shorthand for the fact that I am in frequent pain and, no it won’t get better. Although (not unreasonably perhaps) I do often have to remind people of that fact.
Where endometriosis gets complicated
Part of the problem is that endometriosis is very common (there are over 1.5 million sufferers in the UK alone) but very few people appreciate exactly what endometriosis is. For example if I mentioned to someone that I suffered from backaches, or migraines most if not all would know what I am talking about and could relate to what that means.
I suffer from both as a side effect actually, but I won’t complicate this further. 🙂
Start talking using the words above and people get nervous. Start calling it by its real name and you’re asking people to get their heads around something they can barely pronounce let alone spell. I know that because that’s how I felt when I first heard someone say it to me.
Endometriosis isn’t sexy, it doesn’t sound sexy and it stands little chance of getting the same recognition as other chronic diseases because it’s not life-threatening. Few celebrities or powerful people will admit to having it.
It’s a long story
It’s become easier for everyone all round to just tell people the simplest shortcut to what people might want to know, why I’m in pain, and how likely that is to effect them. Here’s the full story of endometriosis should you be so inclined.
I don’t blame anyone but myself for this feeling of shame, but I hope it goes some way to explain why I am confident enough in my life to talk openly about most things, but talking about endometriosis and its wider effect on my health still proves difficult. It’s something that even some of my closest friends and colleagues still don’t fully appreciate or understand.
It’s a disease that provokes secrets, particularly the act of wearing a proverbial mask. Endometriosis is invisible. You can’t tell someone who suffers with it apart from someone who doesn’t, it’s just there.
I’ve started to hide behind its secretive status. Hiding how much pain I am in, or slinking away to rest. I do this in order to not trouble people with the details that will discomfort them, I manage most days by pretending nothing is wrong, so everyone (including myself) is less on edge.
When I’m comfortable enough around someone, I’ll give them the longer version, perhaps sparing the worst details. What endometriosis is, how it will affect how we interact or work together and how and if they can help me. I tell the people I care most about when I am truly not doing well, because on the very worst days honesty is the best thing I can produce.
So then others can spot those moments when my mask is up, and know exactly what to do.
I and many other endometriosis suffers are slowly winning in the ongoing battle of shame, by using every opportunity we can to raise awareness of this illness.
I’m starting by writing this website using my own name.