My story: menopause while living with disabilities

How to advocate for yourself during healthcare appointments

NHS nurse Laura’s Bibby’s perimenopause coincided with a life-changing spinal cord injury.

Here, she shares her story to raise awareness of menopause and disabilities, and advice on how to advocate for yourself.

‘In 2019, at the age of 41, a devastating spinal cord injury caused significant changes to my whole body.

‘This left me paralysed and needing emergency surgery – but unfortunately I was left with permanent damage to the left side of my lower limb, which resulted in me becoming partially paralysed. I was told I would never walk again.

‘I have four daughters, and the youngest at the time was three, so essentially I swapped the pushchair for a wheelchair.

‘I’m also a nurse and have worked in the NHS for 23 years. My job then was trying to improve care and services for people with diabetes who had foot amputations, so I had spent a lot of time speaking to people who needed wheelchairs – and found myself in the same position.

‘Previously I had worked in trauma, but although you look after people who come in after trauma and are paralysed, you never think it will happen to you. So when I was told I may never walk again, it was a huge shock. I felt I had no option but to look at alternatives and find out how I could adapt and overcome my condition.

Adapting to life using a wheelchair

‘I went back to work quite quickly – after five months – using a wheelchair. I just adapted, really. But I also had intensive therapy with a company that specialises in spinal cord injuries. I went from being a full-time wheelchair user to someone who can walk with crutches, depending on energy levels and whether it’s a good day or a bad day for me.

‘The COVID-19 pandemic interfered a lot with my recovery – my specialist therapy stopped for one thing. But working from home did give me that little bit of freedom to work on my rehab at home. I had been a yoga teacher before my injury, so by adapting my yoga practice, pulling in skills I’d learned from therapy, and my own skills as a clinician, I made my own rehab programme. I went into the pandemic not walking, and when I came out, I was walking.

The impact of perimenopause

‘Looking back on it, I hit perimenopause around the same time I had my spinal cord injury, but it was hard to tell at the time because I was living with chronic pain, chronic fatigue, and all the things that go along with having a life-changing event happen.

‘About two years after the accident, I went to my GP – I probably had a bit of a breakdown – and was told it was because of my injury, and I was started on antidepressants.

‘I fought against that, because I didn’t feel my depression and low mood were due to my injury. I’ve never been an emotional person – working in A&E, you can’t just burst into tears when something sad happens, and I’ve watched many people die and supported people through traumatic events. Yet here I was this person who was bursting into tears at the most ridiculous things. But my GP said it was depression, and that I should take antidepressants.

‘And then there was the joint pain. Again, the GP said it was due to the injury, and gave me more painkillers. And I also couldn’t sleep and was anxious.

Starting HRT

‘Nobody was putting these things together, nobody was connecting the dots. I was two years into my injury and suddenly developed depression and anxiety? It didn’t sit comfortably with me.

‘It was only when I got the night sweats that I thought “this isn’t right”. I went back to my GP and asked for HRT. I had to fight for it, because they were a bit nervous about me having oral tablets because of the increased risk of clot, but I knew I didn’t want patches because I already have patches for pain relief.

‘I’ve just started on HRT and while it hasn’t resolved all my problems, it has stopped the night sweats, and reduced the insomnia. So it’s early days, but I feel it might make a difference.

‘What upsets me is that so often people make assumptions that anything that’s happening is to do with the spinal cord injury rather than to other things, such as perimenopause.

‘Medicine is so scripted – I’ve been under a urologist because of my spinal cord injury, but they haven’t connected that, maybe some of my symptoms could be down to menopause. And the neurosurgeon doesn’t talk to the gynaecologist, and so on. We should have multi-disciplinary teams that get together and say, “look, she’s in her 40s, maybe it’s not the injury, maybe it’s menopause”.

Using my story to help others

‘I’ve shared my story on Instagram and so many people have sent me messages saying it really resonates with them, and that they’ve struggled to get support too.

‘I think there’s a real lack of information about menopause and disabilities, and so many people feel they’ve been brushed off when they’ve looked for help.

‘I’m a real advocate of people’s rights and would definitely advise anyone who feels they have these symptoms – whether to do with menopause or anything else – they should go with their gut (it’s usually right) and go to the GP with their concerns.

‘I want to educate people living with disabilities about the extra challenges of menopause. None of us deserves to be brushed off.’

You can follow Laura on Instagram @ blue__brick_disability

Would you like to share your experience of perimenopause or menopause? Write to us at shareyourstory@balance-app.com