Going through menopause with a disability

Too often, women living with disability are left out of the menopause and midlife women's health conversation and, as a result, put their symptoms down to pre-existing health conditions, not realising that they could actually be entering perimenopause or menopause.

Katie invited Emma Livingstone, founder of Up – The Adult Cerebral Palsy Movement, to the podcast to share her own story and to explain why it is so important for women, in particular those with cerebral palsy, to have their own pathways within healthcare.

Emma talks about her own experience living with a long-term disability and why she was inspired to found Up and campaign for better understanding and support from the medical community and the wider community.

Listen to the full conversation in The Latte Lounge podcast episode above.

Some of the key information from this episode:

Up is the only UK charity that's focused solely on adults with cerebral palsy. They want a society where cerebral palsy is not a barrier for adults to live full and active lives. 

We understand more now that cerebral palsy can be degenerative, and there are other comorbidities that happen as you age with cerebral palsy. But until about five years ago, CP was still being recognized solely as a childhood disability. Children grow into adults, and we are learning more and more about what happens to those adults as they live with long-term conditions like cerebral palsy.

My co-founder Miriam was my long-suffering physio as she took me through my rehabilitation after hip surgery. 

Listen to Emma's story, or watch the video on our YouTube channel

What has it been like for you, growing up and living with cerebral palsy?

When I was younger, the common thought about cerebral palsy was to give somebody as much rehabilitation as they need to get on their feet or to get as functional as possible and that those skills would see them through for the rest of their life.

I was actually discharged at 16. And I remember the consultant saying to my parents, she's never gonna be a ballet dancer, but she can walk independently, and she's doing fine.

And good luck and goodbye, really, and you'll transfer to your GP. They didn't really understand that there can be a degenerative impact of living long term. 

All of us find it more difficult as we age to be as mobile as we were when we were in our twenties. That happens, but it happens at an accelerated rate. Sometimes people call it premature ageing. I don't like that term because it normalizes it as a normal process for us.

That is generally the direction that we are all going in, and we just seem to have it happen faster. So my hip issue was arthritis really that kicked in, but it just kicked in earlier because of the way that my joints, my dysphagic joints, were. The ball and the socket didn't fit quite properly, and therefore, there was wear and tear early.

How does perimenopause affect those in the community that you support?

I originally reached out because we were having lots of questions from people asking whether we go out through the menopause earlier and what information that we had. Some of the work that we've been doing at the charity is to find out a little bit more about these comorbidities, the things that people suffer from as they get older with cerebral palsy. 

What we are finding is there is a higher instance of anxiety and depression within the CP community and that people often report an increase in pain as they get older.

Unsurprisingly, there's lots of neurological fatigue within the community, but you'll also recognize some of those symptoms as menopausal symptoms. I came across the term diagnostic overshadowing, and I think that because I was totally in the CP world and understood what CP was going to be like for me, some of these symptoms that I was having, I initially assumed were part of ageing with CP.

I also started to experience these symptoms at the end of the pandemic, when we'd all been hemmed in. I had three children homeschooled, and we were running support groups three times a week. So I thought, well, no wonder I'm feeling tired and anxious.

I started to get problems with my shoulder. So much so that I wasn't able to put a coat on. I wasn't able to straighten my arm. I was no longer able to hold a cup of coffee without being in lots of pain. And when I saw a physiotherapist, although we recognized that CP was having an impact because the pain was increasing, the spasms in my arms, which I'd never had before, the underlying cause was potentially capitis, which she then said is often associated with hormone changes. 

I went to talk to my GP, who I've got a really good relationship with. She suggested we try some HRT, and I saw a really big difference, particularly in my shoulder pain.

That started to make me question whether we always put things down to ageing with CP or if there is something common to women with CP and some of the symptoms that we are experiencing that may be related. One of the things that the research tells us is that women who have CP are much more likely to have osteoporosis.

Many of us in our community are not fully mobile and not fully weight-bearing. So it isn't surprising that we don't build up bone mass and density. And then, if you have a drop in oestrogen, then perhaps that is not surprising that there are a lot of people within our community who have risk factors for osteoporosis.

Often as you get older, your balance deteriorates, and you fall more often. And then, when you look at the frailty figures for CP, there's a higher incidence of frailty. When you look more closely, you see that there are many more breakages and fractures for women than men.

So I guess I was just trying to join the dots and think, well, Is there something that's hormonally related here that’s not just about CP? Obviously, the CP may be what causes you to fall, but it might not necessarily be the reason that you fracture more easily, and I just wanted to understand that.

I found papers that said that women with cerebral palsy have three times more incidence of breast cancer. And as a woman with cerebral palsy, I started to think, well, they didn't say why, so is this a pathological reason or is this an environmental reason?

I know that it would be difficult for me to get into a portacabin where often the mammograms are taking place. I know that when I have to go to the hospital, and I need to change and put on a gown, that I find that difficult. And then the thought of trying to manoeuvre myself into one of those machines is quite difficult and daunting

I know from our community that many of the people that I support don't go for the screenings that they're offered for this reason. I also know that many of the women don't go for their smear tests because of problems with access. If you think that anxiety and pain, and positioning cause spasms, then as a woman, you can understand that having a smear can be very distressing for the community.

What would you like to see in place to support the CP community in general but especially women in perimenopause and menopause?

We need better GP education because our GPs are amazing, but they don't have enough time with us. They need to have these symptom checklists and look at people living with disabilities to say, well, hang on a minute, this is not necessarily just about CP, but actually, this is perimenopause and menopause. 

A lot of the advice that we are giving to our population in general about staying active, I don't necessarily think that within our community, many people are having those conversations. Because they're busy dealing with cerebral palsy. 

The NICE guidelines that came out in 2019 suggested that adults should be having an annual review, and yet we're still not getting those. So what we've done for our community, and you can download them from our website, is a self-assessment in a similar way to the symptom checker the Latte Lounge provides so that adults can do that for themselves and then go and have those conversations with the GP.

You have to have quite good advocacy skills to talk to your GP and then wider practitioners, and many of our community have communication difficulties or use communication aids. When you've also got that as a barrier, we have to empower women to advocate for themselves.

We also have to understand that we are asking quite a lot for some people to be able to do that. If you are seeing different people every time, then that becomes really difficult; I think there are some simple things that can be done to help.

For example, we know that for some conditions which are at risk of osteoporosis, they are offered Dexus scans, or they are known to the GPs as being at higher risk. And so they'll think about it as yet CP isn't recognized as one of those conditions. And so what we are trying to do is work with GPs to say these are the sorts of things that you need to flag with their patients. 

RELATED: How to look after your bone health in midlife to prevent osteoporosis

What needs to change in order to make the world we live in totally inclusive for those living with a disability?

As a wider campaign, we want CP to have the health quality that other long-term conditions have.

There are 130,000 adults living with CP in the UK, and that's an equivalent size to MS and Parkinson's. And yet we don't have the same equality of service that those other long-term conditions get. We don’t want anything different or better, just access to good healthcare, clear care pathways and practitioners that understand our condition as we age. 

What's been fantastic to hear is about the education that's going on for practitioners, the education that's going on for men, and the education that's going on for the BAME community. And what we want is for the disabled community to be thought about when they plan at this level.

One in five of us lives with a disability. Even if you don't have a disability, things are going to get more difficult as you age. It affects all of us. So some of the things that we're asking for in terms of cerebral palsy, which is a physical condition, will also benefit other people as they get older.

Up run a weekly get-together where they bring in people to come and talk to the community. It's also just a place to talk to other people with cerebral palsy.

Their midweek matters sessions run every Wednesday between 6.30 and 8 o'clock. These are virtual sessions attended by people from all over the country and even from overseas too. Everybody's welcome.

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