This is me: How hidden disability affects my body confidence

·4-min read
Photo credit: Paul Groom
Photo credit: Paul Groom

For all of us, body positivity is a work in progress. But we deserve to love who we are, inside and out.

In this series, we speak to women about their different body confidence journeys.

Julia’s story

Not all disabilities are visible. According to research from Parkinson’s UK, more than half of people with Parkinson’s feel betrayed by their body.

One of the main causes in the decline of body confidence is not being able to exercise anymore, followed closely by being embarrassed by symptoms. When it comes to symptoms in particular, stiffness, tremors and posture are most likely to be having the biggest impact on individuals’ body confidence.

Julia, 56, has been living with Parkinson’s for 20 years. She is a retired nurse and now volunteers at her local university, speaking to student nurses about Parkinson’s. She is also chair of the Parkinson’s UK Poole and District branch.

When were you diagnosed with Parkinson’s?

I was 36 when I was diagnosed with early onset Parkinson's. I was newly married to my second husband at the time, and we were settling down for a happy life together. I didn’t see the diagnosis coming at all, and it was quite devastating to be dealt with the blow of Parkinson's.

As a nurse, I knew what I could expect from the condition, and that was hard because I understood there was no timeframe. Some people’s symptoms progress very quickly, and for others it’s much slower. The uncertainty is very tough.

What was your reaction in the early days?

To begin with, I was furious. I was actually more angry than upset, because I just felt it was so unfair.

I didn't realise at the time, but depression and anxiety are under diagnosed in Parkinson's. After my diagnosis, I had six months on the sofa in my dressing gown, feeling low and with no motivation to do anything.

At the time, I just thought it was my illness. But when a Parkinson’s nurse came to visit me at home, she recognised the signs and told me I was suffering from depression. That was the moment I realised that I could either sink deeper, or I could try to live and enjoy my life again.

Photo credit: Paul Groom
Photo credit: Paul Groom

How has your condition affected your body confidence?

85% of people with Parkinson’s say they have less body confidence since their symptoms started to show – and I have had to work a lot on feeling positive about my body image.

With Parkinson's, your body betrays you, it doesn’t behave the way you want it to. You can look drunk when you get out of your car, or for me, when my tremor is bad, it makes me bounce up and down so I look like I need the toilet, and people sometimes ask me if that’s the case.

I love clothes and fashion, but your fashion choices get dictated by what is practical and easy to get on and off. I can’t wear high heels but instead I buy really cool flat shoes.

My tremor is a resting tremor, which means it stops when I’m doing something, so luckily I can still put on my make up and do my eyeliner. However, my husband has to help me do up my bra, and it’s really frustrating feeling powerless.

What makes you feel body positive?

A new handbag! I also love getting dressed up, socialising and going out for dinner and dances. My husband and I go to Ceroc dance events. I love dancing, but if I were on my own, my body would freeze. However, he initiates the movements, supporting me as we twirl around the dance floor. That makes me very happy.

What would you say to people out there struggling with their body confidence?

There’s life after diagnosis, no matter what you’re going through, even if it doesn't feel like it. There are lighter moments and humour to be found.

If you can be brave enough to go to a support group and meet people going through something similar, it can be life-changing. I joined a Parkinson’s UK group about 12 years ago and we’re still friends now. It’s refreshing that we hardly ever talk about Parkinson’s – we don’t need to. The important thing is knowing we all understand.

For information and support, visit parkinsons.org.uk or call the charity's free, confidential helpline: 0808 800 0303

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