International Women's Day 2024
On the 9th March 2024 I had been invited by Brighton Women's Centre to give a speech as part of a panel about intersectionality. Sadly, due to security concerns (nothing to do with me personally) this part of the event along with others was cancelled. I was pleased with the speech I had written and so thought I'd share it here.
Today I’m going to talk about medical gaslighting and my
experience of having a delayed diagnosis due to not being listened to by
several GPs as a younger woman.
I wanted to start by asking if anyone here has left a
medical appointment feeling like they didn’t get the help they asked for? Quite
a few of you. This ha happened to me countless times and when I mentioned that
I was coming here to talk to you today some friends came forward and shared
instances of this happening to them and it seems like it’s shockingly common
for women to be dismissed by medical professionals.
I wanted to make clear that I am not having a go at the NHS
and that I have had some really good experience with some excellent healthcare
re professionals over the years. However, there are some professionals within the ranks who, for whatever reason, have taken on the role of gatekeeper and
are denying women access to further diagnostics and tasting.
I have a rare condition called Friedrich’s ataxia which
affects my mobility, speech and ability to carry out everyday tasks. I started
to feel wobbly in my early twenties. I began finding stairs difficult to manage
and I couldn’t a cup of tea without spilling it. So I felt the sensible thing
would be to go and see a doctor about it.
The first GP I saw barely listened to me before practically
frogmarching me out of his office telling me there was nothing wrong with me.
The second simply said: “some people are just like that”, and again I was shown
the door. The third finally did pay some attention but very matter of factly
told me that it was probably MS but to see how things were in a month and come
back if symptoms persisted. Symptoms had been persisting for a couple of years
by this time and so waiting a further month at this point seemed incredulous. A
month is a long time to wait and do nothing when you’re told that you might
have multiple sclerosis, a very serious and life-changing condition. But I
waited and did return and I was finally sent to a neurologist and my journey to
a diagnosis finally began.
During this period of being ignored I began to wonder if,
actually, there wasn’t anything wrong with me and this seems to be really
common. The other women I spoke to about this all said they second guessed
themselves at points and wondered whether it was, in fact, all in their minds.
But I feel that coming here today as a disabled woman, more than 20 years after
I was first ignored by GP proves that I wasn’t making it all up.
Because my condition is rare it took me seven years of tests
to find out I had some form of ataxia and a further two to find out it was
Friedrich’s ataxia which is genetic, progressive and incurable. I can’t say if
having a quicker diagnosis would mean I could have made lifestyle changes to
improve my condition and that I may be able to walk now but it is something
that I think about often.
I have a friend who is currently waiting for the results of
a biopsy to find out if she has cancer. It has taken her four years to convince
her GP to do the tests and she finally got the go ahead because she took her
husband into the appointment with her. I always had more successful
appointments if my mum has accompanied me when I was younger before I learned
to advocate for myself. Even now when I go for an appointment I’m scared that
I’ll leave with nothing but the feeling that I’ve wasted someone’s time. As
I’ve gotten older and my confidence has grown things have improved and quite
honestly, I think a lot of the older male doctors refused to listen to me have
retired. This shouldn’t be the case, I should have been listened to in the
first instance. Women, whatever their age or race or sexuality or class should
be believed.