Guest post by Hayley Crowther, for MS Awareness Week
It’s not very often in life that anyone eye rolls you in a professional setting, but a medical setting? By a doctor? A FEMALE DOCTOR? Yup – this is part of my laborious Multiple Sclerosis (MS) diagnosis story.
In December 2015 I woke up and thought I’d just got up a bit too fast – but spent the next couple of hours falling over, bumping into things and wondering who the hell had moved all the keys on my keyboard at work! I saw my GP the same day and was sent away with a diagnosis of vertigo. I’d never had this before, so I didn’t know any better and just got on with it.
Over the next few days I realised there was a weakness down one side of my body, I couldn’t predict how heavy something would be (like when you miss a step on the stairs), and was throwing cups of Ribena over myself. It felt as if all the words in my mouth were on top of each other, and I just didn’t feel right.
I decided I knew my body and went to A&E, convinced I had had a stroke. I saw a lovely, young male doctor, who did some tests. (Did you know that thing where they tap your knee with a little hammer is a real thing? Turns out it is!) He decided to err on the side of caution and send me for a non-urgent MRI, which followed a few weeks later, as did a follow up appointment with a female neurologist.
She was rude with me from the off, obviously had earmarked me as a time waster. I gave her a list of examples of the issues I was having, such as putting mascara on and not being able to get to my eye, or doing my hair and not being able to get my hands to coordinate. She actually scoffed at one point and told me that my examples are not neurological complaints. She rolled her eyes at me when I said I thought I’d had a stroke, and made me feel like a complete idiot. She decided that I had an inner ear infection and told me she wouldn’t see me again unless my MRI showed something. I left the appointment crying, feeling I had nowhere to turn.
Fast forward 4 months, 2 MRI scans, a lumbar puncture, a privately paid for appointment with a lovely neuro, and a complaint via the PALS department after a receptionist told me in error that my MRI was clear, I arrived at my diagnosis of Relapsing Remitting Multiple Sclerosis in May of 2016.
I consider myself a feminist, which is why this whole experience made me feel worse. Out of all of the medical professionals I saw in this time, I only saw one woman; it was her who made me feel the same way I’ve felt in other medical scenarios, when I’ve been begging for help from a man, knowing they think I’m a hysterical woman.
I’ve been advocating for my own care since 2016 now, and I do not take no for an answer. I struggle because every medical professional I see listens intently for about 16 seconds whilst they browse my medical record. Then they see Multiple Sclerosis, a £££ sign pings up, they tilt their head and tell me, with a sympathetic tone, it’s probably related to my MS and I shouldn’t really bother GPs because I have ‘my own’ medical team.
Even if I went in with an ingrown toenail, they would tell me it was MS. It’s all just another expense to them; it’s as if I’ve used up my allowance so I just get fobbed off. My MS team consists of nurses who are stretched – if there’s an emergency, they have a voicemail service and “aim to get back to you within 3 days” – and my MS appointments with my neurologist run 22 months overdue.
Having this illness is already exhausting, in every sense of the word, but the constant battle to get the care I need is just horrific. And don’t get me onto the subject of the treatment from the DWP… I could write a whole piece on that!
You can find Hayley on Instagram @littlehmc