Last month, Lena Dunham’s profile on The Cut opened up a wider conversation about living with chronic pain. Diagnosed with endometriosis in 2014, Dunham claims that the physical pain caused by her condition, as well as the endless doctors’ appointments and surgeries, left her relationships ‘shabby at best’ and ‘fractured at worst’.
Specifically, she described her relationship with Jack Antonoff, which ended earlier this year, as lasting ‘longer than it should have’ because of her illness. ‘He’s a very loyal person, so he was not going to bail when the going got tough,’ she said, ‘When you’re sick, so much energy goes into making sure the other person is well that you’re not even noticing maybe our schedules aren’t compatible. Maybe we want different things out of our lives… Maybe these essential questions that people have to ask themselves all the time are not being asked, because we just want to make sure that I don’t pass out at the grocery store.’
It’s something we don’t often consider when we’re healthy, how privileged we are not to lose friends, partners, even family by virtue of being physically well. However, many women are suffering, and not only feel isolated by physical pain, as Lena herself describes, but literally isolated from those they love. Here, five women explain how it feels to lose someone because of chronic pain…
Sophie Ward, 24, started suffering with chronic muscle and joint pain, food intolerance, migraines, burning soles and nausea at age 18, and was finally diagnosed with Lyme disease when she was 23.
‘I had to end my two-and-a-half-year relationship because of my declining health,’ says Sophie, ‘I didn’t want to stop the one I love from experiences, opportunities and adventures because of me. We had more arguments as I began to isolate myself, I didn’t want to pass on the hurt I was feeling, he couldn’t understand and thought I was being cruel and cold, but I thought I was protecting him. Nobody at 19 or even now at 24 wants or deserves a life that is revolved around doctors and hospitals.
‘I felt I wasn’t worth fighting for, a drain and not someone anyone would ever be with. You don’t just mourn the loss. You mourn the shake-up in confidence too. You blame yourself and with that you have so much mental and emotional unrest on top of the medical and physical pain you are experiencing. It is just so overwhelming.’
Kate McGoey, 38, was diagnosed with endometriosis at 18 and has been in chronic pain for 20 years. This is how it has affected her friendships…
‘It is difficult for people to understand what constant, chronic pain means. Everyone experiences pain in some form and to some degree but it's very hard to imagine the impact of that pain becoming a constant companion. The chronic nature of it means that it becomes very boring and people lose interest or are unable to grasp what it fully means to live this way. When you don't "get better" friends often, understandably, feel frustrated, annoyed and exasperated. And then they stop being in touch.
‘There's a huge amount of guilt, guilt at having to turn down invitations, cut short get together and miss so many special occasions. There's also more complex guilt tied into having a condition that won't kill me and still finding life very hard, very often. Surely the fact that it isn't terminal means I should be grasping every second and living life to the max. I sense if I do share how hard it is that people often think I should count my blessings because I'm not dying. And that's right of course, but it's tricky to find a balance of sharing authentically whilst being cognisant of your luck.
Jenny Liddle, 45, has had chronic back pain since she was 25. For her, it’s affected her relationship with her daughter the most…
‘When my daughter, Emily, was a toddler, I couldn't do important things other mums take for granted like pick her up and comfort her. I felt dreadful, like I was letting her down because I couldn't do things the way I would have wanted to and had to find ways around things. I always worried that she might take it as a form of rejection in some way or a lack of care.
‘I coped by finding ways to ease my pain such as physiotherapy exercises, yoga, microcurrent therapy from the Alpha-Stim and posture control, which have enabled me to come off painkillers completely now Emily's older.’
Kirsten Rees, 36, has Fibromyalgia, a chronic condition that causes widespread pain all over the body. She developed it six years ago having already suffered with hyper-mobility since birth.
‘I used to be active, a party girl, going mountain climbing and completed Tough Mudder,’ says Kirsten, ‘[the pain] began when I turned 30 when I started feeling tired and then the joint pain followed. I hid what was happening so my friends never knew, but I just couldn’t do the same level of high heels and late nights or adrenalin sports anymore so my social life changed dramatically.
‘I had to quit my job, and I lost friends and my social life, it felt like I lost my whole identity.
After six years of t listening to doctors and consultants tell me what I can’t do, I met a woman called Corrine Hutton, she was an inspirational speaker at an event and is the first quadruple amputee to climb Kilimanjaro, so I’ve decided in 2019 I’m going to do a climb, no matter how long it takes me.
‘It’s taken years of trial and error to find a self-care regime that helps after so many prescription medications that caused side effects. But I’ve learned to love myself again, have a completely new set of friends who accept me as I am and who support me in every way, and I’m even writing a book on living and working with chronic pain.’
Lauren Quigley, 28, has suffered with migraines since she was 13, and about a year ago they became chronic. She has since trailed various medications but is yet to find one that works for her.
‘The relationship that changed the most was my relationship with my girlfriend, we are no longer together as a result,’ says Lauren, ‘we were in a long-distance relationship for two and a half years, she was my best friend and partner, but as my condition worsened I could barely leave the house never mind travel to London to see her, so she could only ever come to me.
‘She was always busy and became more and more distant, It felt like she couldn't cope with the change in my condition. Frustrations grew, arguments became more frequent and I realised I just didn't have the energy to cope with this whilst I was so unwell. She was taking her frustrations out on me and it made me feel guilty at times, even though I knew it wasn't my fault.
‘When she said she couldn't empathise with what I was going through it shocked me so much as she'd seen the pain I was in. I felt as though she no longer saw the person she'd first fallen in love with, but instead just saw my illness.