I’m 43 years old, I’m autistic, and I have cerebral palsy. Now, I’m also navigating perimenopause.
There are around 13 million people currently peri- or menopausal in the UK, equivalent to a third of the entire UK female population.
I’m grateful to awareness campaigns and celebrities who have brought menopause into mainstream conversations because, finally, people are talking about it.
But for women like me — women with disabilities — the conversation doesn’t always reach us, and the support we need isn’t always there.
The average age for starting menopause is 51, but for people with learning disabilities, it tends to start earlier.
In my case, I was 40 when I started to notice that my periods were getting heavier, which was unusual for me. I also noticed that my mood was all over the place, and I was getting more irritable with people.
I was diagnosed with cerebral palsy at birth and have exceeded many doctors’ expectations for my life milestones, building a full and thriving life for myself. But when menopause symptoms hit, everything felt like a disaster.
I felt overwhelmed and confused by how it was affecting me – however, I’m lucky to have an incredibly supportive family and support workers who arranged and came with me to see a GP.
I wasn’t sure what to expect, but I had a very positive experience. The GP referred me for a scan, which showed a 4cm fibroid in my womb, and I was then referred to an oncologist.
Right now, I’m managing the symptoms without medication or HRT. It’s not always easy, but I feel better when I talk about my symptoms.
I’m very fortunate to have great female support workers from my provider, Dimensions, who are roughly the same age as me and provide reassurance when I need it. Sadly, I know others aren’t as lucky as me.
Many autistic people and those with learning disabilities struggle to communicate their symptoms, which can lead to misdiagnosis and, in many cases, overmedication.
I know a lot of people end up feeling isolated, scared, and without support.
With the help of my support staff and sister, I developed a few key strategies that have helped me manage menopause. I hope these might help others with disabilities too:
Using a “traffic light” system to show how I’m feeling. Red means I’m having a bad day and may need extra support, green is very happy, and amber is in the middle. This helps my family and support team understand if I’m struggling and how to help.
Talking about my symptoms with a support worker or a professional like a CBT therapist. Discussing my symptoms ensures that someone understands what’s going on in my body.
Going to my GP. I know doctor’s visits can feel uncomfortable or scary, but I’ve had positive experiences with GPs who want to give the best care. Don’t be afraid to make the appointment, and consider bringing family or a support worker along.
Too often, people with learning disabilities and autistic people are overlooked in healthcare.
Menopause is disruptive and unsettling for anyone, but for someone who relies on routine and normalcy, these changes can be confusing and disconcerting. We need to make sure that people like me receive the support they deserve, no matter their circumstances.
It’s not just about physical health; it’s about dignity, understanding, and ensuring no one feels alone.
To learn more about supporting people with learning disabilities, visit: https://dimensions-uk.org.