The shame of endometriosis

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.

Getting better

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.

7 responses to “The shame of endometriosis

  1. Sarah Davis

    THANK YOU MICHELLE! I have been trying to explain this pain to my family for 5 years. My pain does not have “routine”, it comes and goes whenever it wants with no warning and it is relentless! I have tried to describe this pain by saying it is like have a contraction that NEVER stops! I too have debilitating pain down my legs to my knee that actually paralyzes my entire leg so that I have to literally drag the affected leg around. Of course the back pain and loss of sleep is right there next to it. Needless to say hysterectomy is on Thursday morning as I cannot take this pain any longer.

    • Thank you Sarah, it’s really important that we all talk about and share our experiences of pain, it’s not something we have to put up with or be quiet about 🙂 I hope your operation gives you some much-needed relief.

  2. Stephanie Ezzo

    Thank you so much for writing this! I find it extremely difficult to explain endometriosis to people…I’m convinced that everyone in my life just thinks I’m really lazy and anti-social. My closest friends and family know the truth, but they don’t understand at all, and I’ve learned not to complain about my pain too frequently because they get tired of hearing about it. I do have pain every day though, and I’ve been like this for the past 9 years (I’m 26 now). This pain can be quite debilitating. I relate to every word on this website, and it’s just so comforting to know that I’m not alone! Between all the years of hormonal treatments and surgeries and anti-depressants, I am physically and emotionally worn out. It’s just so exhausting. I can get so tired just walking up the stairs in my apartment building, and it’s because I feel like I’m carrying around a brick in my abdomen and it gets SO HEAVY. I look like I’m in great shape on the outside though, so why would anyone ever suspect that something is wrong? It’s too confusing to talk about, so nowadays when people ask me what endometriosis is, I just tell them to “google it.” That way I don’t have to awkwardly use the word “uterus” and then see the uncomfortable expression on their face.

    • Yes, you’re right, life becomes exhausting, and it feels like I become more exhausted with each passing year. Hard to explain that to other people, I hope you’ll slowly grow in confidence to be able to talk about it more.

  3. Great post Michelle. I have a really hard time talking about it at work because my boss is a man and it feels strange to mention something like this to him. I have briefly touched on it to him, but not in detail. The thing I find difficult though is missing work and an explanation. What do other Endo sufferers do about work? Do you work full time? I do currently, but I find it difficult with the fatigue. And I know that a lot of docs don’t recognize fatigue as a symptom, so it’s difficult to tell your co-workers why you are late or why you can’t come in and it’s gets to be a bit much after a while. I’m not really sure how to handle it. I would prefer, I think to have a flexible schedule, but again, not sure how to approach that and whether or not a doc will validate my need for this. I have an appointment coming up, so I will discuss with my doc. But I find docs to be pretty uninformed! Even ones that you think would be, seem to only know the basics.

  4. Pingback: Living with the pain – thedreamer1985

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My name is Michelle and I've been living and working with endometriosis since diagnosis in 2010.

I hope to provide some hope for this illness through practical advice and discussion of this awful disease.