Author: Phoebe Snedker

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Cancelling Hospital Appointments for the Queen’s Funeral is Cruel to Disabled People

The coffin of Queen Elizabeth II, draped in a flag and with a crown and flowers atop

Earlier this week, an OpenDemocracy article revealed that thousands of people would be impacted by the cancellation of all hospital appointments and non-urgent surgeries that fell on the date of the Queen’s funeral. 

At a time when hospital waiting lists are at an all-time high, with almost 6.8 million people waiting for appointments – 377,000 of those patients having waited for more than a year – such a drastic decision feels completely unjustifiable. One thing is for sure, though – those affected will mourn their cancelled surgeries, appointments and treatments far more than they will mourn the Queen.

The 19th of September, for me, was a glimmer of hope – a sense of light at the end of a long, dark tunnel. After two years of pushing for answers, I was finally going to have my first cystoscopy, and my second laparoscopy to explore my chronic bladder pain and ever-worsening endometriosis. At just twenty-one, I have been in chemical menopause for over a year due to multiple failures to properly manage my condition, and this surgery was the turning point I have been desperately waiting for. 

At this point, I am just desperate for something – anything at all – that will give me answers. That will give me something to work from. An explanation. A break – even if it is just for a while – from the constant unknowing, the obsessing over every new symptom, the relentless cycle that is dealing with chronic illness. But now the funeral of one wealthy woman has taken that little glimmer away from not just me – but from thousands upon thousands of people who were likely placing all their hope and faith in one appointment. 

This country is in a time of crisis, in more ways than just one. People are choosing between heating their homes and feeding their families. GP appointments are a rarity, as people across the UK struggle to access basic healthcare. 

People cannot afford to live – we’re barely able to afford to survive. Yet somehow pouring what is already reported to be billions of pounds into one funeral is justifiable? 

This all just feels like one big cruel joke. 

Rescheduling these appointments is not a matter of just pushing things back a day or two. This disruption will add weeks of uncertainty and suffering to the already inhumane amount of time patients have endured at the hands of a broken NHS and a thoughtless Government. It will only further contribute to an ever-growing backlog of patients on waiting lists. 

Regardless of your views on the monarchy – whether you love them or hate them – it is simply absurd and offensive to suggest this is an acceptable decision to make in the name of “respect”. Once again, the lives of the chronically ill and disabled have been totally disregarded to accommodate the wealthy, with absolutely no signs of remorse. 

Where is the respect for our lives?

Sophie, age 30, is one of many patients who has been impacted by the disruption to hospital services. “I was referred to ob/gyn by my GP eight months ago, and I was scheduled to have a video consultation on Monday lunchtime. Being referred for an internal body issue, I can’t imagine there is much a specialist can do via video call so I was expecting that I would already have to wait another few months after that to actually be seen in person.”

“I’m frustrated that I can’t have my video consultation as it’s just delaying things even more, but I don’t really know if there is anyone I can take my frustrations out on. I also feel that because it was only a first consultation, there are others across the country with far more serious conditions that are being delayed and not getting what they need.”

“Me and my husband are starting to make plans for a family, and it makes me feel anxious that if we do find anything sinister, perhaps catching it earlier would have made a difference.”

June* has also been affected by the last-minute cancellations in accommodation of the Queen’s funeral. “Mine was a chemotherapy appointment for Stage 3 non-Hodgkin’s lymphoma.” She told me that she has been stuck on waiting lists since June this year. 

“The change to my appointment means my treatment course will finish later, and will impact pre-paid travel plans.” 

“This will also change care plans for my mum. It really is a miserable situation. My mum has her own appointment with oncology on Monday, but that is still going forward!”  

What is most upsetting about these stories is that, as isolating as it may feel to the individuals suffering, these are not isolated cases. All patients who have had appointments or surgeries cancelled as a result of the Queen’s funeral will feel this pain, anxiety, and mourning regardless of where they are in their treatment journeys. 

As now-King Charles steps forwards into his new role, the rest of us are thrust multiple steps backwards.  We are left once again in the dark about our futures, our conditions, and our access to desperately needed healthcare.

My question is, where do we draw the line? This is not a matter of being pro or anti-monarchy, it is a matter of logic – and it is simply illogical to believe that such drastic cancellations and closures across the country are remotely respectable or appropriate. 

This country has been in a state of mourning for a long time – not for the Queen or the increasingly controversial presence of the monarchy, but for the people constantly overlooked and left behind in its wake. What more will it take for this country to recognise just how little “respect” these establishments have for the lives that need it most? 

When disabled and chronically ill folk can access acceptable standards of care, families can feed their children and people can heat their homes without experiencing all-consuming anxiety, then – and ONLY then – should we feel it acceptable to go to such lengthy measures to honour a funeral.

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Why are we so Obsessed with “Overcoming” Stories?

Non binary presenting person with a shaved head with crossed legs in a wheelchair, they have their tongue out and are giving the middle finger to someone/thing off camera

Recently, I have found that my social media timelines have been overflowing with ‘overcoming’ stories. People that have ‘overcome’ their traumas, their medical issues, their financial issues, and so forth. 

We are taught to admire the people who came from nothing, the self-made billionaires and the people who put their work above everything else in their lives. While we can all applaud these success stories, and recognise the work that people put into their careers and themselves, it is important to acknowledge that having this same narrative repeated over and over again can be especially harmful to the chronically ill and disabled community. 

Using Molly Mae’s recent ’24 hours in a day’ fiasco as an example, we seem to be spoon-fed this idea that if you want something bad enough, it is achievable – you just need to put the hours in. It doesn’t take a genius, though, to realise that this is not the case for all of us. 

As a chronically ill woman myself, knowing that as a result of my condition I may be unable to have children, I have often found myself thinking “it’s okay, it’ll be different for me” –  even though the reality is quite blatantly in front of me. 

There has long been the narrative that in order to lead a happy life, or to be truly successful, you must ‘overcome’ your burdens, your ill-health, or that you must ‘rise above’ the financial situation you were born into – but what happens when you physically cannot do this? 

These promises that ‘wanting something bad enough’ is enough to make it happen is simply an idea that is setting us up for disappointment. We don’t all have the same 24 hours, the same way that we can’t always ‘overcome’ things – whether that is medically, physically, financially, emotionally, and so forth – and we need to stop pretending that we can, or that it is a rite-of-passage to do so. 

Such a narrative reeks of ableism; disability and health conditions are constantly portrayed as things that are essential to overcome, and when you cannot do this, it seems to necessitate a journey whereby you battle your own demons and have this grand epiphany, that makes you realise your purpose as a disabled person is to share your story and inspire able-bodied people as they gratefully think to themselves “I’m so glad that isn’t me”.

Having a chronic illness means accepting that you cannot always be in control of your work-to-rest balance. On the days that my body feels functional and my pain manageable, I feel a great sense of imposter syndrome, and on the days that I can do nothing but listen to my body’s demands for rest, I feel hopeless – worthless, even. 

There is no tying a pretty bow on that and calling it inspirational, it’s a case of taking each day as it comes, and accepting that I need to allow my body as much of my ‘24 hours’ as it needs. 

If illness and disability is consistently portrayed as negative, or something we should strive to overcome, how are we meant to feel whole when our illness is chronic, or our disability permanent? 

My condition has no cure, and with the pandemic wreaking havoc on surgery waiting lists, my treatment plan has come to a steady halt, too. Pretty, colour-coordinated posts on self-care and motivation can only help you so much when there is physically nothing you can do to change the reality of your health. 

This is my issue with toxic positivity and productivity – we only seem to recognise and applaud success when there is a consistently upward trajectory. With this narrative of fulfilment being so heavily prevalent online, it is no wonder that folk like me struggle so much to accept our own achievements and success, as perceptions of success, ‘overcoming’, and what this should look like is almost always intertwined with good-health and ‘getting better’.

To suggest that the parts of ‘my story’ where I struggle or have to ‘give in’ to my condition are something I should ‘overcome’, is to suggest that I am incapable of truly thriving as a result of my chronic illness, and for tending to my body’s needs. 

My condition is incurable, but it is also not ‘inspirational’ of me to work through it – my condition is simply a part of myself that I am learning to understand, respect, and work with – not ‘overcome’ and thrive from. 

It is essential that we recognise how the expectation that we should persevere and ‘overcome’ everything that life throws at us is an unrealistic and often unattainable standard to maintain. You can be successful irrespective of your health, just as you can be fulfilled and content irrespective of your financial situation. 

I am tired of waiting for the miracle where I am ‘saved’ from my condition, or to be freed from the expectation that all I do is merely an attempt to motivate able-bodied people – “because if she can do it, so can you!”

How we spend our twenty-four hours is not something that can fairly be compared, as no two people’s lives or abilities look the same. 

Comparing ourselves to others and these ‘success’ stories online will only ever set us up to feel inferior or insecure in ourselves and our own capabilities when, in reality, we all achieve things at our own pace, in our own ways, and irrespective of our health. 

The only thing that needs overcoming, here, is the narrative that success necessitates us to overcome fragments of ourselves in the first place.

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When I Say ‘Endometriosis’ you Hear ‘Infertile’, and I’m Tired of it.

A woman sat on a sofa with her arms crossed looking annoyed at another woman in the foreground

TW: This article contains discussions of reproductive health and fertility.

Seven months ago my consultant made the decision that it was in my best interests to be induced into chemical menopause. In the two years since my initial diagnosis via surgery, endometriosis had returned and spread to my bladder and was showing no signs of slowing down.

With the NHS waiting list for laparoscopy and cystoscopy looking dire, and my inability to finance surgery for excision privately, it seemed there was a ticking time bomb strapped to my organs – and medical menopause was my only feasible option. 

The concept of menopause at twenty years old is bizarre, though I trusted my consultant’s judgement. The injection I am taking, Prostap, has a concoction of side effects, alongside the existing unpleasant symptoms of menopause, but it feels the endurance of these side effects is the lesser of two evils.

Continue reading “When I Say ‘Endometriosis’ you Hear ‘Infertile’, and I’m Tired of it.”