This year has seen me hit a major birthday. The year I was born is always seen as a special one, worthy of discussion, and not only because a certain Mr Orwell used it in a book title long before it happened. It was also the year of Purple Rain, the original Macintosh computer, ice dancing to Bolero and Band Aid. It was a special year. Bowling for Soup even wanted to use it as a song title, but five rhymes better than four, so that didn’t happen…
Mid 1980s - Thatcher in power, my birth, miners’ strikes
While the miners were walking out of the pits, I was struggling to walk at all. A bottom-shuffler, my Mum has told me I never crawled, and never tried to. My walking was a source of worry to everyone, but put down to laziness by most medical professionals.
I don’t have vivid memories of Mrs Thatcher or her government, but I’ve been told that she put “thousands of lazy people on disability benefits so that they wouldn’t count as unemployed” and ruin her stats.
A dark statement for dark times. I knew that the assumption that people with disabilities are “lazy” and “don’t want to work” was far older than I am, but still, it’s a nasty concept.
Late 1990s - High school, pain, New Labour
It was in the late 1990s, towards the end of high school, that the excruciating pain in my right leg and fainting episodes started.
This was also when I was first accused of “making up” my symptoms and pretending to faint on an almost daily basis. The last years of high school were very hard, as I became increasingly isolated due to the illness which would remain undiagnosed until over a decade later.
In the meantime, Mr Blair was putting time limits on disability benefits and implementing medical tests which cancelled benefits, only for many claimants to have them reinstated on appeal.
Early 2000s - Diagnosis (finally!), entry into work life
In the early 2000s I lost the first of many jobs because of my health. An office junior in an accountant’s office who were desperate to save on postage, I spent my days walking all over the city centre delivering mail that was too good for a stamp.
This was also the time that a doctor finally took my daily agony seriously, sort of. The insistence that my pain was imagined, or created for attention, remained, but a young GP said that he would do an x-ray, if only to put my mind at rest.
Two weeks later I sat in his office and he told me my right hip was displaced, and had been displaced, since the day I was born.
Two weeks after that an orthopaedic surgeon was telling me there was little they could do, while his registrar tried to talk me into having a hip replacement. They argued about it for hours. In the end, I didn’t have the operation. I still haven’t had the operation. Having researched it extensively, if it’s up to me, I’ll put it off forever.
Twenty years and a couple more diagnoses later, I know that a hip replacement wouldn’t fix everything completely. The arthritis in my knee aggravated by the hip dysplasia, but caused by hypermobility spectrum disorder, would still be there. My shoulder would still pop out at least once a month, my jaw a few times a year.
Of course a hip replacement is absolutely the right decision for some patients with hip dysplasia, and if you’re on that journey or have had a successful experience with it, that’s amazing. Just, for me, it’s not the right way to go.
2010s: A new decade and a coalition, learning to live with it
The 2010s brought a coalition government who ramped up (pun intended) the “disabled people are fraudsters” narrative exponentially. My Nanna, a hardcore, lifelong Liberal Democrat voter who had Multiple Sclerosis (MS), cursed the party to her dying day. Her daily battle with pain was looked upon with suspicion and doubt; the existence of what is an incurable lifelong and life-limiting condition was no longer accepted by those who were in power.
David Cameron’s stories about the negative lived experiences of his own disabled son added a tinge of cruel irony to his battle against the disabled.
In the meantime, I was employed in various jobs as an agency temp, a choice of employment detested by the DWP (on/off employment makes for complex benefits payment sums), but regular illness and hospital appointments had made me undesirable as a permanent employee. While the hip dysplasia was now accepted, no one could (or would) find a physical cause for my other symptoms.
As far as many doctors were concerned, my hip pain simply could not be that bad, especially if I had had it my whole life as I should “be used to it” and it was impossible for me to be suffering with anything else, because I was “too young” to have more than one condition. This meant everything else continued to be labelled variously as hypochondria, mental health crises and simple make-believe.
To add to that, mental health in the 2010s was not taken very seriously (it was three years prior in 2007 that a certain Ms Spears was publicly and internationally ridiculed for shaving her own hair off), and my issues were seen as too much for any self-respecting company to deal with.
Especially as I was probably lying about it. That wasn’t even a mental health issue. I was just doing it for attention, like all the other lying, over-imaginative disabled people who just wanted money.
The roaring 2020s: Pandemic(!), more diagnoses, more Tories than you can shake a lettuce at
While the world was being overwhelmed by COVID-19, I was seeing more doctors, who came with more diagnoses and medication and treatment plans.
I was incredibly lucky to be able to see doctors as our NHS was rapidly falling apart under the stress of the pandemic (and it’s nowhere near recovered yet).
While the Tories were clinging on interminably, their leaders were changing quicker than PPE (which there wasn’t enough of). Just prior to the new decade beginning, Teresa May, in the end days of her leadership, promised to radically reform the life experiences of disabled people, having done nothing to improve them prior to that. Boris Johnson introduced yet another strategy, with no disabled people actually being consulted on its content, and the advent of long-COVID brought many more people to their knees, literally. Liz Truss flirted with cutting benefits further, believing you can force people into work by taking their money away, a theory she decided to test nationwide by imploding the economy. Then came Rishi Sunak and his war on “sicknote culture”, a blatantly ableist, monstrous policy. A combination of everything that came before, demanding more medical evidence than ever, removing the rights of GPs to sign people off and handing this responsibility over to non-medically qualified civil servants, and basically assuming everyone on benefits is guilty of fraud unless proven otherwise.
My formal diagnoses brought the benefit of reasonable adjustments to my work life, and being believed on the days where I was not well enough to work, even if the leaders of our country would believe otherwise…
The boring 2020s: New government, rainy days
Our latest election started with a rainy day and they’ve carried on ever since.
My arthritis is responding painfully to frequent precipitation and my PoTS is aggravated by the higher temperatures and humidity. My recent infection has sparked levels of chronic fatigue I’d forgotten were possible to have while staying awake. I’m managing, but it’s an exhausting time right now.
We have a new leader, in the shape of Keir Starmer, often called dull, boring and worse, but perhaps there are reasons to be hopeful? Disability featured heavily in the rhetoric prior to the election, particularly because of Ed Davey’s willingness to speak about his own experiences of parenting a disabled child and Rishi Sunak’s aforementioned war on disabled people.
We shall see what the future brings now. I’m trying to stay positive and continue my life as healthily as I can, taking time and care when I need to, without being accused of lying or making anything up again.
But as winter fuel allowances are stripped back quicker than you can say “it’s a little nippy today” and Starmer’s new mantra of “we have a lot of tough decisions to make”, it doesn’t seem likely that the fight will be over any time soon.
We shall see what the next decade brings…
Take care,
Donna
Self-care snippet
Recently I had a painful morning after a night of poor sleep and arthritis aggravating weather. As, at the time, we had been having unseasonably chilly, wet weather, I decided to make a banana split with yogurt, reminiscent of one of my favourite summer treats. I used up some lovely seasonal peaches we bought as well. Definitely recommend a banana split for breakfast.
Things I’ve seen, heard, read and talked about
The Crime Cafe: Interview with Michael J. Young This podcast deals with crime fiction, but the author being interviewed here is a doctor, so the introduction features a discussion about the American healthcare system and the pitfalls of consulting Dr Google. While people are now able to research their own conditions (without which I probably never would have been diagnosed), there are dangers with the validity of all of the information available online. The US is one of two countries that allows the advertising of prescription drugs, but of course advertising focuses on selling a product and not all of the things which need to be considered when providing a prescription. This can create a dangerous situation where people feel they know what is best from marketing and are telling the doctors what to do, and if the doctor doesn’t agree with them, finding one who will.
£2.5M in memory of Merseyside businessman and football chairman to advance Parkinson’s research A generous memorial gift which will go towards researching treatment for Parkinson’s disease.
How I Chose (And Funded) My New Power-Chair A personal experience of sourcing a new power-chair. While everyone’s experiences of choosing and funding mobility aids are individual, it’s interesting to see someone’s experience from start to finish and there is some useful information about funding options here too.
‘A positive step forward’: Mattel launches first blind Barbie A piece about the first blind Barbie who carries a cane and features tactile clothing. She is the latest addition to Mattel’s more inclusive and diverse range of dolls, which has also featured a Barbie with Down’s syndrome.
Everything Katie Ledecky Has Shared About Living With the Health Condition POTS This is an uplifting and positive piece about Ledecky’s experience of living with PoTS. Having said that, it’s really important to remember that articles like this can reinforce negative stereotypes about people living with the condition. Many people would read something like this and say “She’s an Olympian, so what are you complaining about?” neglecting to remember that the vast majority of people are not Olympians, never mind people living with life altering conditions. Lots of people with PoTS also have associated conditions such as hypermobility spectrum disorder (like myself) which can make exercise even more difficult - I used to love swimming but no longer have the strength in my right hip to stay afloat and had to accept that. Ledecky was also lucky enough to receive a quick diagnosis which is incredibly rare. So while it’s great to see a piece which raises awareness of the condition and the adjustments you need to make to your life, it’s vital to remember that this is one person’s experience and is not reflective of the effects the condition has on all patients.
You can read about how the motorised treadmill contributed to the diagnosis of cardiovascular and respiratory illnesses in the latest edition of Seventy Years of Books.
A quick note to let you know that I’m having surgery in mid-September, so will be taking a short break from posting while I recover. Take care and speak soon!
I had no idea you were living with all of this, Donna. I’m sorry that you have been treated so poorly by so many over the years. Our productivity mad governments should be ashamed of themselves. I hope things do improve for you under the latest lot. I’m not convinced they will though. All as bad as each other is my general feeling. 💙
Happy birthday - and this is a really important and relateable way to talk about the politicisation of disability - whilst grounding in popular culture along the way. Thanks for sending the link