Lupus

Sexism in Healthcare

In my mid 20s I was diagnosed with a 17cm cyst on my left ovary. Prior to this my ex partner would gaslight me, saying I had given myself these symptoms of bloatedness, pain and nausea, because “the brain is a powerful thing”. The diagnosis came after months of to-ing and fro-ing with my GP, then Brixton based, who dismissed my concerns instead choosing to respond with wildly inappropriate remarks like “women don’t drink enough water, you’ve probably given yourself a UTI” and “stop eating your Bangladeshi partner’s cooking then” when I insisted he refer me for further testing. He didn’t and I had to seek alternative treatment, taking myself out of work for a couple of hours without telling anyone (I was a temp on a short-term contract and didn’t get paid for hours I took off) and visited the local sexual health clinic. I asked for a female doctor, because I felt she would take the matter more seriously. I hadn’t always thought of gender as having such a pronounced effect on the sort of service I would receive but here I was.

It didn’t take very long for this doctor to ascertain that something was indeed wrong. Following an internal exam where she pressed down on my stomach simultaneously, she announced there was a mass and it wasn’t small. She wrote a note to my GP insisting he refer me for an ultrasound. He wasn’t too pleased when I turned up with it and grumbled “I’m only the doctor, what do I know?” Not a fat lot of good, as it turned out.

6 weeks later, I had a scan at King’s College hospital where I watched as the sonographer’s face flitted from one part of the screen to another and she rolled the probe further and further up my abdomen. “You have a cyst, a larger one on your left ovary, and I’m just checking to see whether it’s affecting your kidney function”. This was all rather alarming, to say the least. She said she would be recommending an elective surgery to have it removed and they would need to test the mass for malignancy. After my surgery they told me they had drained 1.2 litres of fluid off the cyst but had managed to get it all and it was benign. I was perplexed then, when barely 6 months later, it had grown back to 14cm. Following this surgery I was left with very little functioning ovarian tissue but my doctors said my other ovary would compensate leaving me with about 80% function overall. I read a study that said people who’ve had more than 2 large ovarian cysts have an increase likelihood of premature menopause, which was just the shite icing on the shite covered cake.

A decade on and I am settled back in Birmingham. It’s not been more than a few weeks since I changed my GP (for the umpteenth time). I had an exceptional experience with them when I first fell ill with mental health in 2010. My female GP was a rock, she made all the right referrals and got me started on therapies and medication, honestly without her support I dread to think what could have happened. She left the practice a short while later and I was seen by 3 male doctors, whichever one was on duty. I felt as though I was a nuisance and they were just patching me up instead of looking at the causes of my symptoms. It all came to a head when one of their new partners, whom I’d never seen before, withheld my pain meds just before a weekend and only relented when all hell broke loose (me blubbering on the phone and my aunt actually marching on reception, plus the local pharmacist having a word). He said I was due a review for these meds they’d never put on repeat prescriptions because I was ‘a suicide risk’ and candidate for cardiac arrest. When I attended the surgery on the Monday following the weekend, he shouted at me, and threatened me and my aunt with police action, prompting me to run out of the surgery.

I registered with a new GP who did a review of my pain meds and decided to keep me on them because I ‘wasn’t abusing them’ and the risks of taking me off one drug and putting me on a new one outweighed the potential fallout from codeine. No surprise this was a female GP. She even put it on my repeat prescriptions so I wouldn’t need to speak to a GP to have it prescribed. When I mentioned the palmar erythema and tingling on my top lip and how I’d read that these symptoms are caused by elevated oestrogen levels and how I’d suffered with ovarian cysts when I was younger, she booked me in for a blood test to check my hormone levels. She was surprised this hadn’t been done before but I wasn’t. She said I’d need to be tested on my period, so they can gauge what is and isn’t normal. That must have been what done it for the male GPs, all that icky period talk, who can be bothered with that eh? What is most unsettling is that the symptoms all point to a bunch of scary conditions that can be life threatening, things like lupus or ovarian cancer, other auto immune diseases, cirrhosis of the liver.. things you don’t take chances with and yet.

Doctors are putting women at risk of premature death because sexism. All that power goes to their heads and they cannot conceive of a scenario in which a patient knows their own body better than they do. Yes, I use Dr Google, with the caveat that I am not a trained medical professional and am only seeking clues as to what could be wrong. I can understand medical jargon and make reasonable assessments that I would then like a doctor to follow-up on. I think this pisses them off because being a doctor is such hard work that mere plebs shouldn’t even attempt to understand. Perhaps it diminishes their self-worth, to be shown up like the sexist job’s worths they are.

I am proof that those of us on multiple axes of oppression will fall through the net, again and again. We’re easy to write off and brush under the carpet. I say this as someone who will scream injustice even when I’m on the floor and giving up, but most people aren’t like me. Most people do curl up and die, without a whimper.

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So over the DWP

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It has been almost a full year since my personal independence payments were stopped on the 27th January, a whole year sat around waiting on a tribunal and I still haven’t heard anything. A whole 550 pounds taken off my budget, impacting my recovery in ways that have only become apparent this many months on. I was awarded the higher level, based on my conditions and medical reports. My spine is fusing at L5/S1 following two surgeries to remove a prolapsed disc that had caused marked damage to the nerves in my left foot, leg and buttock. The second op was an emergency and doctors were amazed to discover I wasn’t incontinent considering the position of the disc. A stroke of luck. Adhesions following the surgeries have left me with chronic pain in my lower back and surrounding areas. I also suffer from complex post traumatic stress disorder. Commonly affecting prisoners of war, this condition was inflicted on me. PTSD happens when a life threatening event causes trauma that is still evident more than a month later. Complex PTSD arises when your life has been threatened multiple times. I am due to see a rheumatologist, to find out whether I have lupus or rheumatoid arthritis. Lupus is an autoimmune disease that seems to affect groups affected by white supremacist imperialism, funnily enough.

Of course I would rather have a life filled with new experiences. I would have liked to do a bungee jump. I would have loved to travel the world a bit more, gone to more music festivals, and taken that foodie holiday I used to dream about. A tour of all the foodie heavens; Italy, France, Spain.. I also wanted to go on a walking holiday, Camino de Santiago, even as a non believer, because it sounds delightful and you get to meet lots of people along the way, and I love people, despite all their bullshit. I would have liked to take in the world’s ruins and visited Frida Kahlo’s Blue House. I would eventually settle far away from the rainy fascist island I was birthed on, once I’d got my bearings in the world.

Life dealt me another hand. One full of pain and suffering, of unfulfilled potential. I don’t like asking for my dues. I don’t appreciate having to reel off my trauma history every time my status is called into question. That’s what doctors are there for surely? To confirm the treatment you have been receiving, to give their expert opinions on the state of your health? I asked for a supporting letter to send to the DWP who were insisting I come in for another ESA assessment, a thing I absolutely could not do. They are aware of my mental health, they’ve been advised numerous times. The admin service said a supporting letter would cost £46, approx 1/3 of the emergency rate they have now placed me on (because I failed to provide a GP’s letter). When I explained my circumstances they sent an identical email reiterating the cost and clarifying that supporting letters are considered ‘private work’ and not available on the NHS.

So this is how they’re going to kill us now is it? Make it impossible to jump through the hoops they expect you to jump in exchange for their meagre offerings?

I’ve stopped talking to everyone. I’ve stopped asking the GP for help, stopped bothering the DWP, don’t see any point in talking to my therapist or advocate. I guess I’m resigned, hurtling towards the inevitable. I’m calm, eerily so. I just haven’t enough fight left in me to tackle the system. I haven’t even told my family, because what good would come of it? Nobody is in a position to carry me. I have survived this long only because of the kindness of friends and even strangers. I don’t really have that access any more. I can’t be bothered to do anything about it either.

The British government has wilfuly caused the deaths of many thousands of sick and disabled British citizens. I have seen firsthand how they’ve implemented this, every step of the way. I have only made it this far because of all the support I receive but even that is insufficient now. I truly have no vision for tomorrow. I don’t see how my circumstances will improve and more to the point, I am done trying. This isn’t a statement of intent, just a heads up that I’m sitting down now and I’m not getting up.