Opinion

“Fed up with being infantilised as a disabled person, I now go to hospital appointments alone”

Writer Rachel Charlton-Dailey was fed up with being infantilised at hospital appointments, so now she goes alone – despite the pain that causes her. 

“She’s absolutely fine, this is all normal,” the doctor said. “Nothing to worry about, eh tiger?”

Reading that sentence, it would be safe to assume this was a doctor reassuring a mother after her infant had been taken ill. Well, you’d be wrong. I was 24 when a doctor used that exact phrase to tell my mother, not me, that I didn’t have polycystic ovary syndrome. That’s right, my mother was told before me. There was no reason he couldn’t have told me – I was in the room and fully conscious – but I am also disabled, so sadly I’ve found this is the norm.

As a disabled person the sad reality is that I’m used to being treated as someone not smart enough to understand what’s being said to me – like a child. People slow down their words and emphasise what they’re saying. And, sometimes, because of the audio processing issues associated with dyspraxia, I don’t understand. But all these factors combined means that people, especially doctors, often decide to speak to the able-bodied person in the room rather than directly to me.

Between the age of eight and 20 I was diagnosed with dyspraxia, arthritis, lupus, coeliac disease, depression, anxiety, acid reflux, osteoporosis, chronic migraines and asthma. I’d also had a mini stroke, sepsis, a suicide attempt and an undiagnosed gynecological problem (which still remains undiagnosed at the age of 31). 

Hospital appointments
Rachel goes to hospital appointments alone now

Being ill at such a young age meant that my parents routinely attended hospital appointments – across six different hospitals – with me. It’s normal for doctors to address their patient’s parents if that patient is a child. But I expected this to change as I got older.

When I was 17 a doctor said to my mum, while I was in the room: “It must be very hard on you both, are you getting any support with her?” At 22 years old, an appointment started with a doctor saying: “Ok mum, why don’t you tell us what’s been happening with Rachel?” And four years later, my parents were told: “Now, she must take these tablets at the same time each day, please make sure she does.”

But none of those experiences quite measure up with how I’ve been treated by gynecological department staff. It’s bad enough being infantilised for being disabled, it gets even worse when you’re a disabled woman with period problems.

I didn’t start my periods until I was almost 18, but when I did they were extremely heavy with intense cramps and a lot of clots. Doctors ruled out PCOS, endometriosis and andenemyosis. I tried birth control pills, the coil and the injection, but nothing quelled the pain.

I saw countless different doctors, but never felt I was being treated like an adult. I was talked down to like I couldn’t possibly understand what was happening to my body. When I pinpointed the problem, I was scoffed at and told I couldn’t possibly know that. When I inevitably got upset and cried, I was treated like a petulant child having a tantrum. I was always spoken down to or, worse, spoken about – first to my parents and then most insultingly, to my ex-boyfriend.

I was in my 20s, I had my own house, I was dating, I was an adult… but medical professionals did not see me as such. 

When I moved in with my now-husband in 2018, I lived further away from my parents. My mum asked the crucial question – did I still want her to come to hospital appointments with me? I realised for the first time in nearly two decades that, if I went to appointments without my mum, doctors would have to speak to me, not my parents. I was nervous, but ready to finally be heard.

The first time I saw my lupus consultant by myself I felt anxious. I travelled there by train and bus and got to the hospital ridiculously early because I was so worried about rushing. But instead of feeling prepared and calm, I realised too late this plan only gave me more time to stress instead of calm down. By the time the doctor called my name I was a bag of nerves.

The doctor’s first question was about where my parents were. When I explained I had chosen to come alone, she stunned me with “quite right, you’re an adult now.” When I’d expected to be infantalised, she surprised me by treating me like the adult I was.

I was in information overload when I left the appointment and had to go to a coffee shop and call my mum so I could relay all the information to her. After she reassured me I felt like I could take on the world. Even if I did crash when I got home.

Although I feel more respected going to appointments alone, advocating for myself is physically and mentally draining. I’m exhausted by the time I get there from travelling, and I find myself getting flustered trying to find the correct ward on my own. I’m always thankful if I arrive early, or the clinic is running late as it gives me time to compose myself and get my anxiety in check.

I have to make sure I take a big list of everything I want to discuss with the doctor and questions, I then have to take notes during the appointment because I struggle with my memory. But it all worth it.

I shouldn’t have to put myself through further pain in order to be taken seriously by the people who should be helping me, but I’ll continue until I feel confident doctors will address me, as they should. 

Images: Getty, writer’s own