I think it’s safe to say that 2020 has not been the year any of us had hoped for. If 2020 was the year you had been hoping for, please seek help. From wildfires to a pandemic, it’s a miracle that so many of us have made it through (I do realise we still have a few days to go, but we made it this far), & for the benefit of future historians, here’s how I did it:
New Year was a time of blissful ignorance; it feels like a lifetime ago that Australia was burning to the ground, & a strange virus was ravaging China after someone other than Ozzy Osbourne ate a bat. After celebrating with friends & family it was time to return to work, albeit a little plumper, with plenty to do in regards to driving up recruitment for the clinical trials I work on. Life continued as normal for the next couple of months. While political tensions in the UK were still high following the December 2019 General Election, this didn’t have a significant impact beyond our news feeds & social media.
Not far into the new year a new opportunity arose, & within a few weeks I was officially made an Equality & Inclusion representative at work. This gave me a permanent place on the committee that oversaw equality measures for the entire medical school, as well as a professional outlet for a personal passion. It was something to be proud of.
Throughout February, as the Australian bushfires died, the coronavirus began to spread across the globe. By the end of the month the red lines on the maps tracking the virus were drawing worryingly close to Britain, & by March several cases had been confirmed within the county of Yorkshire. When visiting the local hospital’s gynaecology unit in March, I made sure to use copious amounts of hand sanitiser as I rode through the hospital, because the virus had now been officially declared a pandemic.
The hospital appointment itself was frustrating, to say the least. I raised concerns about my current treatment not working properly, but despite this I was discharged from the clinic & told to remain on the treatment. I was relieved to have at least been kept on the treatment, which was working better than having nothing at all, but as I knew from personal experience that there were better options out there, I couldn’t help feeling bitter about the whole affair.
About two weeks after my hospital appointment my temperature soared. I was coughing fairly regularly, & my chest felt tight like I was having an asthma attack but my inhaler didn’t really help. Testing for coronavirus hadn’t yet become widely available, & the current advice was not to seek medical aid unless symptoms persisted for over a week, so we’ll never know for certain; but the timing & symptoms seemed to indicate that I had caught the coronavirus, probably at the hospital.
I was fortunate in that my employers were understanding & allowed me two weeks off without a doctor’s note, as these notes were proving impossible to get hold of. The first few days I barely remember, spending most of it in an uncomfortable & restless sleep with vivid dreams & constant sweating. It was during this period that the national lockdown was implemented, & so when I came to enough to engage with the news, the world looked very different. The following days were difficult, distributing my time between the sofa & the bed, & even towards the end of the second week when the fever had long gone, I was still feeble. Given that my chronic illness started with a major virus (https://diaryofadisabledperson.blog/2017/03/05/the-marvel-like-origin-story-with-less-explosions-part-1/), I was all too aware that coronavirus was likely to have done some serious & potentially irreversible damage to my already weak health.
Two weeks after first falling ill I returned to work, this time working from home. Having spent so long working in a busy office the sudden isolation was jarring, and in particular I missed the general office shenanigans and chatter, but at least I had Professor Barking & Marie Furry for company, having brought them home on a whim when I wasn’t feeling well. Due to the nature of my work I also found myself getting bored, as all of the paper-based data remained inaccessible in the office, and I didn’t even have access to the electronic database for several months.
Easter was strange; it didn’t feel entirely like a holiday as I wasn’t getting away from my desk in the literal sense, & our usual Easter get-together with my brother-in-law or parents couldn’t go ahead. Instead I had a long and lazy weekend watching films and playing video games, which due to the lockdown I was getting through at an alarming rate.
By May, working from home felt a little more natural, & I even found that it was a relief having a light workload & no commute given my health. During this period, I also had plenty of time to reflect on a very personal problem that had been gently bothering me for some time; my gender. Having trans & non-binary friends, I quickly found some helpful resources that eventually lead me to the conclusion that I wasn’t a girl at all – I am gender fluid. Once I’d become used to the idea myself, I began to come out to friends & family, who I’m pleased to say took it well. I had yet to come out publicly by the bank holiday weekend at the end of the month, however, which also marked my 24th birthday.
June being internationally recognised as Pride month, I decided this would be a good time to come out as gender fluid. I wrote a blog post & went through every personal profile I could correcting my gender. I was most amused to find that Twitter had assumed I was male from what I tweet & who I follow. Shortly after this, in typical non-binary fashion, I also had my long hair chopped off.
At the end of the month, I was troubled to discover that my repeat prescription for my endometriosis treatment had been cut short. Thinking that it was probably just an admin or computer error, I called up & was asked to book a telephone appointment. When the doctor called me at the set time, I was informed that no information regarding my discharge from gynaecology had been received, despite me having handed them the piece of paper on my way home from the hospital, which I had had the good sense to keep a copy of myself. After much arguing the doctor refused to continue the prescription without hospital support, and told me it wasn’t his problem.
I raised hell with both the GP and hospital, beyond furious that once again I was fighting for treatment for a diagnosed chronic illness that they even had photographs of. No one seemed particularly concerned about the prospect of untreated endometriosis, but then again, they weren’t the one’s having to live with it. After much arguing back & forth, including asking once again for a hysterectomy (which I was denied on the basis that I may want to have children, despite the fact that I can’t physically conceive), I finally persuaded them to put me on the treatment that had worked so effectively the year before. I even learned that the only reason they hadn’t given me this treatment sooner was because the doctor had seen the wheelchair & presumed me to be completely immobile, and therefore carried a risk of bone degradation (which would still have been better for me than current untreated endometriosis).
While this was a win overall, they did insist that I could only have this treatment while using hormone patches that had given both my grandmother’s breast cancer, but at that point I was so desperate for effective treatment I decided not to argue. The fact that replacing the hormones also completely defied the point of the treatment, which was to stop hormone production and thus stop the endometriosis, eluded them. Then, of course, there was the obligatory arguing with the doctor to prescribe what the hospital recommended, and with the pharmacy to dispense what was prescribed, and once all that was over, I just had to learn how to inject myself with the hormones. This actually wasn’t as difficult as I thought, partly due to my professional background, & partly due to the sheer number of injections I’ve watched nurses give me over the years. Eventually, by mid-July, I was back on a proper treatment for my endometriosis.
During this time frame the murder of several Black people at the hands of the police in America had also sparked protests across the world, & living at the heart of a relatively liberal city, I was able to join the strangest demonstration I have ever seen; civil disobedience while socially distanced & wearing masks.
In August, as coronavirus numbers showed signs of slowing down, some of my colleagues returned to the office to process all of the post we had received from hospitals across the country during the lockdown period. By the end of the month I knew that I would be joining them in September and began working out the logistics of how I would return the office equipment that I had brought home with much difficulty. I also took the time to see some of my relatives who I hadn’t seen for months while I was still working from home, & also to sort out my care plan courtesy of the local chronic pain service, who essentially told me that it was gynaecology’s responsibility to treat my endometriosis properly, & that the rest of the pain was a case of needing mental health help. Having had a similar experience many times before, this barely bothered me.
To calm my nerves prior to returning to the office I even took up a new skill; sewing together felt animals. My first attempt was a white llama, who impressively, actually resembles a llama, & the subsequent owl & penguins turned out very well too.
For obvious reasons, September was chaotic and busy. Commuting & participating in longer hours and more physical movement rendered me completely exhausted very quickly, & I felt overwhelmed by the sheer amount of work expected of me. Day-by-day, however, we chipped away at the pile of papers, & slowly it shrunk to a more manageable workload.
In between the monotony of forms in the office, I also noticed that my usual tattoo parlour had re-opened, & following the government’s advice to support local business, I got a couple of new additions to my growing collection.
Professionally, October was a little quieter, with only one important deadline applying any pressure to how I managed my time. I was even permitted to work from home a few days a week to reduce the risk of me catching anything, as coronavirus cases had predictably spiked following the ill-advised decision to lift lockdown restrictions.
Unfortunately, as seems to happen to me approximately every three months, I was once again fighting for medical care. The chasing, emailing, calling, pleading, & going back-and-forth between all the different clinics I attend was exhausting, & it was at this point that I began to seriously consider getting a hysterectomy done privately as a result. I had contacted the local private clinic expressing interest in their service, and from the information provided it seemed that lots of people left struggling like myself opted for the expensive procedure, as they couldn’t obtain the necessary healthcare on the NHS. After balancing the books, my husband & I realised that we can just about afford the procedure, but any hopes of buying a house within the next few years would go alongside my uterus were we to go through with it. It’s a horrible choice to make, & certainly not one someone should ever have to make in a country with alleged universal healthcare, but depending on the responses of the medics in charge of my care, it may be the lesser of two miserable options. It should also be said that the hormone injections combined with the patches were unsurprisingly ineffective, and I was still having periods.
In November a second national lockdown was called, and after some discussion I was permitted to reduce the number of trips I had to take into the office down to once a week. Outside of work I had a flurry of medical appointments with various clinics, with the usual frustrations surrounding arrogant doctors & unnecessary bureaucracy which only served to complicate matters. There were letters telling me my diagnosis of endometriosis was never confirmed (it was), that I was allergic to painkillers I wanted (I’m not), and that the advisory letter written to my GP wasn’t clear enough in its advice. After a strained discourse over the telephone, the GP suggested that instead of trying to manage the pain spikes, we should be trying to manage my baseline chronic pain levels better, reducing the severity of the spikes. As such, it was decided that I would try reducing the dose of one medication that I’d been using for several years while introducing a new drug, one which my mother had seriously reacted to in the past. While I’ve not been on them for very long at all at this point, the strategy does seem to be working, and I haven’t been hospitalised due to side effects.
The day after speaking to my GP, I spoke to my gynaecologist. After learning of the poor results obtained from my treatment strategy, they decided to reintroduce a drug I had previously taken, this time at a lower dose. With any luck this will maintain the efficacy of my main medication, the hormone injections, while stopping the periods triggered by the hormone patches, and still allowing the hormone patches to protect my bones. Almost two weeks later, I’m still waiting for the hospital for dispense the prescription, and am essentially giving up on further treatment for my endometriosis.
It also began to hit home just how bleak of a year 2020 has been for us all. The Christmas market, which usually punctuated the miserable weather with its bright lights & welcoming smells, was nowhere to be seen. Due to hygiene standards, we couldn’t put up decorations in the office at the start of December, as we normally would. The usual warmth & cheer of the approaching Christmas holiday brings was gone. Instead, many of us face the bleak prospect of a lonely Christmas away from family, & by New Year’s Eve I’m sure most of us will be ready to leave 2020 behind us, and we can only hope that 2021 won’t be quite as disastrous…
Diary of a Disabled Person. 
Somehow i’d prefer to postpone the New Year until the pandemic is over, leaving an ginormougantic “2020 – Corona Year” on the calendar, to flip away.
LikeLiked by 3 people
It’s a shame that some doctors think that what they read in a book one time makes them able to tell you what your body is doing, even though you are the one living in the body. Some of these docs really need to work on their people skills – as in, actually acquiring ANY people skills.
LikeLiked by 1 person