Guest post by Daisy Riley
I am a pretty sickly woman. I’m 22 years old now and have spent a ridiculous amount of time trying to convince doctors, specialists, and even my friends and family that I am indeed suffering when I say I am. Let me give some examples.
On Halloween 2019 I had an accident, where I smashed a pane of glass into my foot whilst I was in the shower. I was alone in my flat, so I wrapped a towel around my foot and crawled upstairs to get my phone and call an ambulance (I was very pre-occupied with not getting blood on the carpets!) There were two massive gashes – one about 2cm deep and 3cm long, the other about 2cm deep and 6cm long. I couldn’t move my toes.
The ambulance arrived, I limped over to it barefoot and got my foot bandaged up in the back. When I got to A&E a nurse offered me painkillers, before I settled into a wheelchair for a five hour wait. I was terrified and in pain, and I was bleeding through my bandages, so when I realised it would be a long wait I decided to call someone to let them know what had happened and maybe get them to come and help – only to be rudely dismissed by my sister’s boss.
So I waited alone. At one point I was told to go and have an X-ray of my foot and had to limp there alone – of course getting lost on the way and limping around for a long time on a damaged foot. Once I finally got checked, a nurse gave my foot a very brief glance and said they’d be able to just glue the cuts shut. By the time I got home my new dressings had bled through.
Fast-forward to a week later and my foot was still bleeding fresh blood, was freezing cold, swollen up and I still couldn’t move my toes. I called 111 and eventually ended up getting an Uber back to hospital. This time a few nurses came to see me, as well as a specialist and a woman who appeared to be in charge of the A&E ward. I explained what had happened and was given an official apology that the wounds had not been sealed properly – they should have been stitched shut.
I was then told they didn’t know why it was so cold and swollen, but it was probably nothing. I was asked how long I hadn’t been able to move my toes. I said since the injury. I was told that wasn’t true; that I definitely would have been checked over by my ambulance drivers and the nurse who treated me, so they must have been moving back then. I repeated that I didn’t think they had been, and was told again that this could not be true. However, in a very obvious attempt to placate and dismiss me, I was told to come back to A&E if they still wouldn’t move in another week.
Surprise, surprise, one week later I was back! This nurse finally tells me that, judging from where the cuts are, I’ve almost definitely severed my tendons. I book in to see the podiatrist. I get an ultrasound to check the cut tendons, I’m booked back in to the fracture clinic, and then they book me into surgery. By the time I meet my surgeon it’s been over a month and the wounds are fully healed. He asks how long ago this happened. Tendon repairs really need to be done within ten days of injury, or the tendon will shrink up and most-likely tear again where it was cut. My answer didn’t please him.
When I first called the ambulance, my main concern was that my toes wouldn’t move – so I thought something important must be damaged. To have that concern ignored, then to be told I was somehow lying or confused, was hurtful and made a traumatic situation so much worse.
Another time, I went to the doctors with intense pains in my wrists and hands that were waking me up in the night. She didn’t even touch them. She looked down at my hands on my lap and told me I was a bit skinny so should probably just eat more.
Another time I had a cough for six months and was starting to worry. My doctor got me to breathe as hard as I could into a tube that measured the breath’s strength. When I did, she was shocked, saying: “that was so weak – breathe as hard as you can, is that really as hard as you can?” I replied yes and she shrugged, saying maybe if I’d moved to London recently it was just the pollution here affecting me. I told her I’d moved here three years earlier but she shrugged it off.
The best one: in 2017 I woke up and couldn’t see. A few hours later my vision had started to clear but I had intense discomfort in my head and wasn’t seeing properly. I’ve always experienced migraines with a visual aura, and this felt like I had a migraine with an unusually intense aura that never, ever went away. It’s really hard to describe the feeling, because there aren’t words for the weird visual disturbances I was and am still experiencing, but other symptoms include migraine, headache, confusion, nausea, vomiting, fatigue, body and facial pains, and more. I was obviously terrified. Now, four years on, I have a diagnosis of two neurological disorders with no likely successful treatments.
However, when I went to the doctor about this for the first time in 2017, alone – aged 18, living alone for the first time, struggling to see, balance, walk or even formulate a thought – my doctor told me I probably just had a cold. A cold. Can you imagine?!
The amount of specialists I had to speak to before even getting a diagnosis was absurd. In 2019 I suffered a final dismissal from a neurologist I’d never met before who, upon our first appointment together, said I could “live with it” and there was nothing more they would do for me – before totally discharging me from the care of the NHS.
But that’s a story for another day…
You can find Daisy on Instagram @weak_wrists_r_us