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Today I wanted to talk about women. Having got our UK parliamentarians into such a fluster I figured we needed a chat.

Just as our esteemed leaders delight in misogynistic coercion dressed as mock outrage, the medical profession perpetrates it through neglect. Neglect to research appropriately, neglect to acknowledge female voices, neglect to care.

‘Ok, Emma that’s pretty heavy - what the actual?!’ I hear you proclaim.

Stick with me, folks. Stick with me.

I am talking about a largely historical approach to diagnosis, research and care. Things are changing, slowly. I am interested to hear how many of us are experiencing change on the ground.

Let’s start with the old trope: It’s an old man’s disease.

With PD affecting 10 million worldwide, it is estimated that 10%-20% of these are YOPD eg under 50 years. In women, it is just under 50%, although in Asia it is slightly over 50%. Not really ‘an old man’s disease’ then. Also given the time it takes to diagnose, sometimes years, many will have slipped over the YOPD line of 50 years.

Then there’s misdiagnosis, not exclusive to women. Most PD patients ran the gauntlet when it comes to a proper diagnosis. That is due to the lack of a definitive method to determine PD, GP’s not recognising the symptoms, lack of resources, and sometimes patient resistance. If even the inkling of something horrific like PD is on our radar we often prevaricate confirmation.

I was very lucky and got referred via my arthritis specialist when he felt there was something else going on. Please share your diagnosis story in the comments, I’d love to know how long it took for you to get the support you need, and if you get good quality ongoing care.

Most of this is pretty common to all genders and ages across the Parkinson’s community.

But there is another layer and that is women.

Until very recently there has been no significant research relating to PD in women. How medication and symptoms affect us differently, pain management and the non-motor aspects affect not only our own physical wellbeing but the impact on our lives.

Now, dear readers, you know all this and can google to your heart’s content all the scientific stuff. It’s all out there.

Oh, is she finally getting round to the point of this letter? Yes, yes I am.

If you, my family or my doctor asks me how I’m doing today? I’ll reply with a cheery ‘I’m ok, thanks…you?’

It’s not a lie. But it’s not true either. The OK-Scale is a pretty wide spectrum.

The thing is people don’t like to hear about women’s pain, illness or any other pedestal wobbling facts. Hell, society isn’t even that keen on hearing about the normal female narrative of menstruation, breastfeeding, vaginas or masturbation never mind when things malfunction. Add illness and pain into that and «lalalalal can’t hear you!»

The dangerous part is it leaves us vulnerable to chronic illness which can result in unemployment, homelessness and other life-threatening scenarios. We are unable to fulfil the ‘roles’ we often have. As a woman with a partner, two children, a household and a career to run my ‘illness’ makes that especially hard. I am incredibly fortunate I do have support.

When I was married to my ex-husband (pre-diagnosis) that would have been a different story. There would have been blame, rejection and emotional blackmail. I would have been made to feel like a failure and a bad mother. Ultimately I would have been abandoned, possibly even made homeless by this person’s inability to accept illness. Now he was a particularly damaged person BUT that is not an unusual story.

Society needs to listen when women say they are in pain or seek medical support. They need to be believed and receive a level of care equal to our male counterparts. Misdiagnosis or delayed diagnosis leads to a sense of helplessness which in turn adds to a sense of a lack of value, or that we don’t deserve care.

Parkinson’s Disease already suffers from misunderstanding and lack of awareness. Parkinson’s in women even more so! Add YOPD and 🤫

We need to lobby the medical profession to remind them of their duty to care, agitate for better research and share our stories. That last one takes courage. It isn’t easy showing a vulnerability. Writing this letter is tough as I share some of the deeper less fabulous parts of me. But it has provoked support, for myself and others.

Please comment and share your thoughts.

With Love

Emma xx

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