Geeks vs Loneliness: invisible illnesses – a female take

In which we chat about why sometimes living with oestrogen is no fun at all.

Welcome to our Geeks Vs Loneliness corner, where we’ve been chatting over the past months about issues facing many of us. The idea is that hopefully, in the midst of it all, we can offer a tip or two that can help, or just a place to have a natter about stuff.

A few weeks ago, we were asked to put together a GvL piece (in the commets) that looked at one or two specific issues that women face. We’re always keen to be responsive to subjects that you feel we should talk about in this section. With that in mind, this week, we’re handing back over to the wonderful Jane Roberts again.

Lena Dunham is known for being a little outspoken. Sometimes a little near the knuckle. But sometimes she gets it just right. On the 17th November she posted an open letter to talking about the misery of living with endometriosis

She didn’t hold back, and as I read this letter I found myself in agreement with many of the colourfully-expressed sentiments regarding living with a female body.

Ad – content continues below

Specifically a body that kicks against female hormones, creating a perfect storm of ongoing, repetitive misery compounded with pain, diminished thinking capabilities and a lack of understanding from a medical profession keen to stuff you full of hormones and mind / body bending painkillers to get you to go away. Dunham goes public with the misery of painful periods and the anxiety and secrecy of living with the condition that she endures.

It’s a long letter, and I urge everyone to stick with it. For Dunham is using her extraordinary fame capital to raise a serious issue here. Sometimes – for whatever reason – a woman’s plumbing goes awry. And it rarely gets talked about. Women might talk to doctors behind closed doors, we maybe confide the basics after a couple of glasses of wine to our besties and our loved ones, but mostly we just put up and shut up.

This resonates with me because that’s exactly what I’ve been doing for over 20 years.

Like Dunham, I had issues with debilitating pain and fatigue at university caused by heavy periods. I had a lovely septuagenarian male doctor who really wasn’t equipped to deal with a chronically embarrassed blubbering whey-faced girl who could barely pronounce the word ‘menstruation’. 

Instead I was packed off to the family planning centre and given hormones I neither wanted or needed and which I dumped two months later at the first sign of weight gain and a sudden onset of raging temper. 20 years on and I’ve just been holding my head in my hands as a female GP, who specialises in women’s health, tried to do exactly the same. As Dunham puts it far more eloquently than I:

“Endometriosis is not life-threatening. It doesn’t manifest externally very often; the symptoms just look like a pair of sweatpants and a Charlize Theron–in–Monster–level grimace. I know I’m lucky in the grand health scheme, but I also know that I am one of many women who grasp for a sense of consistent well-being, fight against the betrayals of their bodies, and who are often met with skepticism by doctors trained to view painful periods as the lot of women who should learn to grin and bear it.”

I don’t have endometriosis like Dunham (which is believed to affect one in ten women); I have its lesser cousin of fibroids, for which I was helpfully told to go away and have children as a cure. 

Ad – content continues below

To amuse myself I call the two main troublemakers that line my womb Estella and Miss Havisham – evil old maids intent on causing mayhem and misery. Really, it is no joke. Being allergic to the medication prescribed to help is even less funny when your own vocal cords decide to choke you.

So on a monthly basis I join Dunham in the delirium of strong painkillers and amuse the external world by shuffling like an extra from Planet Of The Apes. I lose a week to pain and fatigue and fight a constant war with anaemia and the resultant anxiety at such a loss of productive life. I make excuses and duck out of long standing appointments because it’s easier for me not to explain why I resemble the Corpse Bride and have a vacancy for a mind. As Dunham found, people stop inviting you if you keep cancelling without explanation.

What Dunham’s article urges women to do is take back control. Not to be afraid to ask questions of health care professionals – or to be afraid to challenge their assumptions if you think they are wrong. Not to deny what’s happening or to minimise the effects of painful, debilitating conditions that are specific to women but which ripples out to affect the whole family or workplace.

Geeks Vs Loneliness has already sought to talk about the issue of hidden health concerns in the GvL articles. Let’s continue the conversation about how life – for both women and men – can be adversely affected by conditions such as this, which can result in extreme cases with hospitalisation, serious digestive system and urinary tract complications and infertility. I for one will be opening a conversation I should have had a long time ago with those around me, including my GP.

Professional advice and support can be found at Endometriosis UK or at Wear White Again.

Thanks, as always, for reading.

Ad – content continues below