My bed is the only place that I don't feel disabled

I do a good job of hiding my truth in plain sight and people are often surprised to learn I cope with severe pain day in, day out. 

‘But you look so well,’ they tell me, or ‘You seem so strong.’ I do my hair, put my makeup on every day and am generally ungrumpy.

But those who know me, know I push through agony with gritted teeth to work as a self-employed journalist, parent, be one half of a happy marriage, see my family and friends. I can’t sit on hard chairs in the pub, go to the cinema, eat out, walk very far, or take my daughter to the park and will cancel plans last-minute, all because of endometriosis pain. 

My disease is severe – I’ve had six surgeries and lost an ovary to it in 2019. I also have a lingering hip issue from an injury during pregnancy.

Sitting, standing, walking – it all makes me feel like death. Usually, I’ll go to bed minutes after my five-year-old because I can’t cope with the pain of my day anymore.

But, when night-time falls, and I retreat to the mattress, there is an absolute feeling of bliss and relief. Lying flat is the only time my pain drops to a more tolerable 3 or 4/10. 

It’s also the only time that clothing doesn’t aggravate my pain because under the covers, I shun it completely, even in winter.

During daylight, jeans or anything with a waistband are a no-go. Most of my knickers, leggings or pyjamas have been snipped around the waist to release the lightest of elastic pressure. 

That’s what my disease, which sees cells similar to those found in the womb migrate and bleed elsewhere, has done to my pelvis; damaging and sticking organs together.

Night-time, however, brings me relief, peace and is the only time I feel like a regular 35-year-old woman. In bed, I can watch a film on my phone without needing to put a heat pad on my lower abdomen, an ice pack on my hip, or suffer relentlessly.

It also brings a part of my life that I cherish and am not willing to sacrifice on – sex. My husband and I fancy each other as much as the first day we realised we were destined to be more than just friends in October 2012. 

Orgasms bring me pain relief and make me feel normal. It also gives control over my body back to me. I rule it, rather than it ruling me with an iron fist of pain.

It eases my anxiety and low mood – things brought on by the relentless cycle of physical pain – and helps me sleep. Our bed is a safe space, free from parenting or life’s stresses. It’s a space to be husband and wife, and for me to be the person I wish I could be during the day. The one that isn’t stopped by pain or frustrated by physical disability and limitation.

There are times that I can’t be intimate and pain seeps into the night, stealing sleep and the companionship of my husband that I so enjoy. Those nights, he sleeps in the spare room because the pressure of his body on the mattress is unbearable. He is understanding, kind, empathic and never resentful. Life gave me pain, but also gifted me a wonderful and understanding partner.

Not all partners can cope with a chronically-ill other half. A man I dated told me ‘no man will ever tolerate your health.’ His words – which thankfully killed any chance of a relationship – still ring in my ears, especially when I’m in a pain flare because I fear my husband might fulfil that unfair and cruel prophecy. 

He reassures me that will never happen, and when we are in bed, our physical connection reinforces his message on a bodily level that my brain and anxiety can’t always accept: my husband loves me and desires me exactly how I am, and is never leaving.

Even if it causes me pain and there are times I cannot act on my urges, remaining intimate is a priority in my life

Our daughter understands why Mummy needs to stay in bed sometimes for days at a time. She joins me with her iPad and cuddles with me. She understands and accepts my limitations without question. She is a sheer joy and blessing.

The temptation to read her night-time story in my bed so that I can be a part of it is acute, but it disrupts her sleep routine so I’ve sacrificed that desire. Instead, I do bedtime twice a week when my husband works late. I cringe (inside) with pain but I do it so that I don’t lose these precious early years.

Then I’ll go straight to bed myself and unwind from the day, agony, stress and worries. I’ll lose myself in a series, catch up with friends and family, or, if I want to, write or edit an article for my work as a journalist. My bed is a safe, comfortable space that doesn’t come with trauma.

In our previous home, and in my parents’ house, I spent so much time ill in bed or recovering from multiple, painful, traumatising surgeries that bed wasn’t a haven anymore. It made me feel anxious and unhappy just to be in that room. But luckily, that hasn’t happened in our new house. I hope it never will.

Some won’t understand when I explain that I often work in bed or might judge me as lazy, but I take this freedom to stay in my PJs all day as the ultimate perk of being self-employed. 

I don’t care about or engage with people who stand in judgement of how I cope, or those who want to cure me with their toxic positivity and inane suggestions of yoga or turmeric. My disease is incurable. Only billions poured into research will change that.

That said, if I had a magic wand, I would give myself a healthy, pain-free and strong body. I hope one day I’ll feel that way, or at least partly OK.

I’m long past the stage of fighting what I am and trying to ‘be normal’ or able-bodied. I’m not, no matter how much I wish I was. 

Instead, self-acceptance, living within the boundaries of my body and taking pleasure, comfort and happiness wherever I can is the way I find peace and strength, even if that place is my bed.

I know many who have endometriosis and can’t have sex or intimacy so I’m grateful that at least this I can do. Even if it causes me pain and there are times I cannot act on my urges (mid-flare or due to the fatigue of surviving a difficult day or week), remaining intimate is a priority in my life.

In bed, I don’t feel disabled, or different. In bed, I feel almost normal.

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