Rachel Charlton-Dailey

Working from Bed Isn’t Lazy. It’s Accessible.

Posted on April 26, 2021June 14, 2023 by Rachel Charlton-Dailey

2020 was a year of change and adapting, something disabled people are already pros at doing.

One of the biggest shake-ups was the move to working from home. As much of the workforce shifted from the office to wherever we could set ourselves up at home, a school of thought that disabled people have had to contend with for years reared its ugly head: you shouldn’t work from bed because it’s lazy. But all of the comments, think pieces, and tweets about it were missing an important voice: disabled people, for whom working from bed opens up a world of possibility.

The notion that working from bed lazy is rooted in the idea that people are only useful when they are productive and that they are only productive when they are physically in a workplace. But as a disabled freelance journalist, writer, and activist I’ve always worked from home. A a full-time office-based job just isn’t an option for me.

My arthritis, osteoporosis, and endometriosis pain makes sitting at a desk for too long unbearable. While I have a desk at home, I probably only sit at it for a few hours a week, using a blanket and pillow to support my hips and back. The rest of the time, I alternate mostly between my sofa and my high-backed armchair. My sofa is a comfy place to work as it means I can cushion myself and put my legs up if I need to. My armchair means I’m sat up, but not uncomfortably so like I would be at my desk.

For a long time, I refused to work from bed. I held a lot of internalised ableism that made me feel as though I was not good enough unless I was pushing myself, so I suffered through the pain and would force myself to work for a full day at my desk. But then the stress and chronic fatigue I experience due to lupus would leave me unable to work for the rest of the week.

Now, I no longer allow myself to think such awful things about myself and only work where I know I will be comfortable and able to do my best. If that means working from bed, I’m happy to do so. In fact, my favourite “business expense” so far in my freelance career has been a bamboo adjustable bed desk, which is perfect for propping my laptop on and even has a space for a cup of tea!

Disabled people know what works best for us. In a world that wasn’t built for us we’ve learnt how to modify what we have in order to be able to do what we love and make a difference in the world.

I’m not the only one who has different spots in the house depending on their pain level. Freelance copywriter and social media specialist Chloe Metzger, who has fibromyalgia and hypermobility, told me she floats between the kitchen table, sofa, and her bed. “It means I’m more productive and it normally makes me feel more in control of my health rather than my disability controlling me,” she said.

“I found I get much more accomplished when I don’t have to expend energy holding myself vertical,” shared Kathy Flaherty, a lawyer and non-profit executive director, who’s worked from her bed since her COVID-19 symptoms developed into what is now known as Long COVID.” “I’m usually lying down until 2 witnesses before me, and that’s when I get out of bed and sit in front of the computer,” Flaherty said.

Working from home gives disabled people the ability to work absolutely anywhere that works best for our needs without the judgment that we would face in a traditional office setting. Communication and outreach specialist Denise DiNoto, who has spinal muscular atrophy, revealed: “I frequently respond to work email while sitting on the toilet. It takes me some time for my bowel regime to work and I can’t justify not using the time to do something besides crap.”

One place I’ve never worked is the bathtub, but it’s a favourite of John Loeppky, a writer and theatre artist with cerebral palsy. “If my pain is bad,” he explains, “I’ve found water really helps.”

Many disabled people have been able to work pain-free for the first time because of the flexibility in working conditions resulting from the pandemic. We must continue to foster working environments that support comfort. And when we have discussions about the most productive way to work in the future, we need to remember that productivity is not one-size-fits-all. We need to recognize the perspectives of a wide range of people—especially from those who are benefitting from a more adapted and flexible world.

Employment

About

Rachel Charlton-Dailey

Rachel Charlton-Dailey is a disabled freelance writer, witch and sausage dog mamma from North East England. Her bylines include Metro UK, The iPaper, Hello Giggles and Folks at Pillpack. When not writing you can find her pouring over tarot cards, curled up with a good book or (very slowly) chasing the aforementioned sausage dog down the beach.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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Working From Home Levels the Playing Field for Disabled People. Why are Businesses so Intent on Returning to the Office?

Posted on January 26, 2021June 14, 2023 by Rachel Charlton-Dailey

I recently went viral on Twitter for sharing how a disabled friend was forced to quit her college back in January because the school wouldn’t allow her to study from home. Just two months later, she watched this exact accommodation made so easily for thousands of others when lockdown happened.

I personally never graduated university. Mental health and disability support at my university wasn’t up to scratch. I ended up skipping classes due to my bad mental health, but my lecturers weren’t understanding at all. I was treated like I was faking to get out of work and infantilized to the point where the head of my program called my mother about my attendance. (I was 25 and didn’t even live with her.) In the end, I failed because I didn’t hand in my year-end assignments. Ultimately, I fell through the cracks.

For the last five years, I’ve worked as a freelance writer because I’ve been told I couldn’t do a staff writer job from home and that I needed to be able to go into the office most of the time. Because I experience chronic fatigue and have a weak immune system, this just wasn’t possible. So you can imagine how upset I was when the pandemic hit and all of these publications boasted that they’d fully equipped all their staff to work safely from home. These same publications have been reluctant to commission my articles about the ableism and double standards that have come to light this past year.

I’m far from the only one who has encountered these issues. Quite simply, pre-pandemic structures didn’t always work for disabled people. My tweets prompted hundreds of replies from people who have had similar experiences of being denied accommodations in educational settings and at work but were now seeing them made so without hesitation.

After being denied flexible working and studying for so long, it was a massive blow for disabled people when it suddenly became manageable on such a large scale. The message was clear: working from home was only a viable option for companies when it affected their profits.

Research from Finder found that two-thirds of UK employers report increased productivity for remote workers compared to in-office workers. Meanwhile in the US, Prodoscore found productivity increased by 47% when working from home. But a report from Timewise, a flexible working consultancy, found that despite working from home being the new normal, the majority of new roles are still advertised as not flexible and would revert back to being office based as soon as possible.

Timewise analyzed 6 million job advertisements and found that 78% made no reference to any type of flexible working options. Of the ones in which remote working was offered as an option, more than half said they would revert to office-based roles once it became possible. But working from home has benefited businesses on the whole, so why, then, are bosses so keen to get back to the old ways?

Working and studying from home has gone some way towards levelling the playing field for disabled people. We can now apply for jobs we typically couldn’t have in the past as they were inaccessible to us. Hours are more flexible and materials are all available and shared online.

The pandemic gave me the push to go full time freelance as it seemed everyone was in the same boat, but when I began applying for freelance editing shifts amidst the confusing changes in the UK lockdown tier system I was once again met with my old enemy: “the role will be from home for now, but you will be expected to work from the office soon,” meaning I was once again excluded from systems that are bragging about how much they are supporting their staff during the pandemic.

Of course, being in a job where you can work from home is a privilege many don’t have. Around the same time as the second wave of the virus started to hit the UK, people started returning to work and disabled people who couldn’t work from home were forced to choose between their livelihoods or their health. As has been the case many times throughout the pandemic, we were offered little support by our government, who initially gave us the “option” of staying at work or quitting and applying for disability benefits.

Disabled people have been among the hardest hit by the pandemic. We’ve already seen our healthcare reduced, our lives put at risk or disregarded entirely, and we’ve essentially been told to lock ourselves away without any further help from the government. In the UK, disabled people accounted for 59% of all Covid-19 deaths from 2 March to 14 July. So, considering disabled people are already 28.6% less likely to be employed in the UK than their nondisabled counterparts, the prospect of something that has benefitted us being taken away once the pandemic is over is devastating.

Companies are outwardly performing inclusion and the spirit that “we’re all in this together,” but it appears they’ll go back to ignoring the needs of disabled people as soon as they can. Society has already failed disabled people enough by not allowing us working from home accommodations in the past. If we go “back to normal” we will be disregarding and failing disabled people all over again.

Employment

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Rachel Charlton-Dailey

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The Complexities of “Passing” as Nondisabled

Posted on September 16, 2020June 14, 2023 by Rachel Charlton-Dailey

“Passing privilege” is a term used to describe what people of minority identities experience when they appear as though they’re not part of that minority group. It means you may not experience the same oppression and problems as others who are of that identity because you can be mistaken for the oppressor. In the disabled community it means that you don’t “look” disabled. Unfortunately, references to passing can also be a way for people within your community to insinuate you don’t belong there.

This usually applies to people with chronic illnesses and invisible illnesses and disabilities. It’s often implied that because you can “pass” as able-bodied, you don’t face the same challenges and therefore have an easier life than someone who is visibly disabled. People judge you solely by what they can see and decide that you don’t fit into their preconceived box of what “disabled” should look like.

The majority of my illnesses—lupus, arthritis, osteoporosis, dyspraxia, anxiety, depression and an undiagnosed reproductive issue—don’t have many physically visible symptoms. Having lived most of my life with invisible illnesses and disabilities, I know that it’s not always a privilege to not “look” disabled.

When we pass judgment on who gets to be considered disabled, we’re basically saying whose pain is believable, and that disabled and chronically ill people are only worthy of being believed if we “perform” our disability.

Not “looking” disabled has meant that I’ve been treated as though I’m lying about my illnesses. I’m used to teasing and jokes about my clumsiness by friends and family, but when people who are supposed to love and support me haven’t believed me, it’s quickly turned to bullying and belittling.

As I don’t display any physical symptoms, illnesses can be harder to diagnose. It took nine years for doctors to take my lupus symptoms seriously and respect that my mother wasn’t being “neurotic” and I a typical hypochondriac teen. I still experience doctors sneering at me and asking how I can possibly know something when I suggest a diagnosis, despite living in a sick body for 24 of my 31 years.

When I use accommodations designed for me whilst not appearing physically disabled, I’m often met with looks and sometimes hurtful comments from strangers. I’ve stopped sitting in the seats reserved for disabled people on the bus even though I struggle to walk further up the bus because I’d rather not face the abuse.

After a while, I started to internalize this and would try to hide my disability as much as possible. I put myself in dangerous situations to make others feel more comfortable. I will never do that again.

In a world that was not designed for disabled people and where the abled body is the cookie cutter, of course there are going to be privileges that come with not “looking” disabled. You may fit in more easily with your peers and you’re less likely to face discrimination and bullying because of your appearance. You won’t have to worry that you won’t be selected for a job because you appear to be disabled. When you date, you don’t have to worry that you’ll rejected based on visible signs of disability in a world of online dating that judges based on images first.

I’ve never been reduced to a wheelchair rather than a human. I’ve never been harmed in public by someone trying to push past me or push me out of the way. I’ve never been told that I’m a burden to my family and that they’d be better off without me.

I’m not denying that I hold a lot of privilege. I’m white, thin, do not live in poverty, am fairly well-educated, and English is my first language. Writing this essay made me look at my own unexamined privileges. Whilst I do struggle some days, on most days I can walk unaided. I’ve never struggled to enter a venue or find a seat somewhere because they’re not wheelchair accessible or don’t have spaces for wheelchair users.

So, where do we go from here? I think all disabled people need to examine their own biases and assess how they can be better advocates within their communities. There’s work that needs to be done both by people with visible and hidden disabilities to challenge stereotypical views of disability. And allies, as always, should educate themselves and challenge ableist behaviour if it’s safe.

It’s tough for all disabled people, full stop. That said, everyone’s experience of disability is different. You can have the exact same illnesses or disabilities as someone and still be on a different path. We must stop ableist comparisons of whose experiences are worse and who is more deserving of being recognized as “disabled.”

Activism and Advocacy

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We Cannot Neglect the Health Needs of Chronically Ill and Disabled People During the Pandemic

Posted on May 28, 2020June 14, 2023 by Rachel Charlton-Dailey

The following post is part of our series on perspectives from disabled and chronically ill people regarding COVID-19. This post is not intended as medical advice. Please note this post only uses first names and some names have been changed to protect privacy.

As hospitals and doctor’s offices around the world go into lockdown to contain the spread of the Covid-19, other health conditions are often being put on the back burner. And while fighting Covid-19 is rightly the top priority for healthcare professionals right now, a lack of access to other types of care is especially affecting the disabled community. When I began researching for this article, I put a call out on social media for stories. The response in just one day was overwhelming. People discharged with no warning, appointments and life-changing operations cancelled just days beforehand, all with no explanation.

Those with chronic illnesses are finding their long-standing appointments with specialists are suddenly cancelled. Kayleigh has been having chronic pain associated with endometriosis and was supposed to see a new pain specialist, but after waiting for five months, her appointment is no longer happening.

“It was a huge blow,” she said. “But mainly, I felt guilty for feeling disappointed that my pain wasn’t considered important. I felt ashamed for being frustrated. There are people worse off than me so I should be grateful. But it’s hard when you already have a condition that is largely shrugged off. I felt invisible.”

Kayleigh’s feelings are common for people with chronic illnesses. After being made to feel insignificant for so long, you start to doubt if your own pain is important enough. At a time when we’re being urged to only go to the emergency room if the situation is dire, many chronically ill and disabled people will suffer at home.

Claire was diagnosed with stage-4 cancer last year. After being given the all-clear for her diagnosis, all CT scan appointments to monitor things were cancelled.

“Being told my CT scan was being cancelled was awful. I cried and was devastated, as all of a sudden no one was making sure I was ok or looking after me. I felt that I’d been left to deal with my condition on my own. If I have a recurrence, I don’t know when anybody will find out.”

In addition to cancellations of follow-up appointments and testing, non-surgical treatments such as injections or replacement of equipment are also being deemed non-essential as doctor’s offices try to protect their staff and limit the spread of infection.

I have undiagnosed but suspected endometriosis, so I get a monthly injection of Zoladex, which puts the body in medical menopause, meaning I can function normally without being in constant excruciating pain. However, because of the lockdown in the UK I’ve not had this injection since mid-February and have seen what was supposed to be my March injection appointment cancelled six times. I have no idea when I’m going to next be able to get the injection I desperately need, and am currently experiencing painful ovulation as my body resets itself.

Many are also finding important, life changing surgery, which would have been deemed high priority before the pandemic, has been cancelled with no idea when or if they’ll be rescheduled.

Lucy’s husband has Familial Exudative Retinopathy, which causes blindness. He was due to have an appointment to discuss the possibility of restoring the sight in one eye when lockdown happened. “The possibility of the operation was both exciting and nerve wracking enough, but the delay is causing a lot of anxiety.”

The National Health Service in the UK is at breaking point and can barely provide the care that’s needed for all those suffering from coronavirus. In order to be able to afford protective equipment and the space that’s needed, the once free service is now relying on donations and fundraisers from the public. This means that those who have paid taxes all our adult lives are now having to fund the free service instead of the government.

To thank key workers for all their sacrifices, we have a weekly clap for carers on Thursday nights at 8pm. While the sentiment is beautiful, it hard to do when you’re feeling so let down by the NHS. As Claire puts it, “I felt like my health/life was being potentially sacrificed to make provision for coronavirus. I have found it difficult to accept the Thursday clapping as even though I know people are working hard in the NHS, it feels like the service has actually been taken away from me when I still need it.”

I know the pandemic is devastating, but by ignoring other illnesses and conditions in an attempt to fight the pandemic, they’re putting at risk one of the very groups of people that the lockdown is most intended to protect. If the needs of chronically ill people continue to be ignored, this pandemic will have killed people without even infecting them.

Health

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Rachel Charlton-Dailey

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Sharing Disability Experiences Online Can Be Risky. It’s Time for That to End.

Posted on April 16, 2020June 14, 2023 by Rachel Charlton-Dailey

Content notes: bullying, harassment, threats of violence and harm

For disabled people, sharing our experiences online can be a daunting prospect, but a vital one to make our experiences known. Many of us use social media to call out daily discrimination in their lives, instances of ableism that they want to highlight or most upsettingly, public assault due to disability.

As most non-disabled people haven’t experienced these things or don’t notice them happening on a regular basis, their first instinct can be to challenge the person who posted. Disabled people are frequently accused of exaggerating events or even outright lying. What should be met with sympathy and understanding is unfortunately often met with disbelief, which can lead to further abuse online.

Instead of asking “are you ok” or acting in solidarity, able-bodied people who reply make out that it was the disabled person in the wrong. If we share that someone has grabbed or touched us inappropriately, we’re told “they were just trying to help! You should be grateful,” as if disabled people are helpless and indebted to abled people. If we post about ableist comments, we’re told it’s not that big a deal and we’re being too sensitive. When we share that we’ve been harassed in the street, we’re asked what we did to cause the outburst, not believing that just our existence is enough to anger others.

Dr. Amy Kavanagh is a visually impaired activist and historian who uses the hashtag #JustAskDontGrab to document her mistreatment whilst using her cane and often receives pushback on Twitter. “Social media is a space for support but also raising awareness,” she says. “So, when non-disabled people express disbelief it can be very difficult, having someone doubt the truth of my experiences or even just denying my emotions or reactions are legitimate, it’s like adding to the trauma of the unwanted touching.“

Often, non-disabled people will try to undermine Dr. Kavanagh’s accounts. “When I explain that my physical and mental safety is more important that another person’s intentions, I’m accused of being ungrateful or not understanding the kindness of others,” she laments. “It’s as if they think I can’t understand my own needs or the autonomy I want for my body.”

Dr. Kavanagh also experiences trolling when she’s not even talking about her experiences. “One of the most common responses I get is ‘if you are blind, how are you tweeting?’”

As a result of tweeting about ableism and her lived experiences, Dr. Kavanagh has been subject to many forms of online abuse. “I’ve had death threats, people telling me to kill myself or that they would kill themselves if they were me, and threats of sexual violence.” Because of this, she has had to increase safety measures, being sure never to disclose where she lives or work and turning off direct messages from those who don’t follow her. “It’s just relentless harassment,” she says.

A couple of years ago, I tweeted about ableist slurs such as the “r-word,” “crazy,” and “lame,” politely asking people not to use them. I didn’t expect to receive hundreds of tweets calling me all those words. There were people insulting my intelligence and appearance. I had personal photos and tweets from years ago shared to illustrate how “r-word-ed” I was. I eventually deactivated my account after being told to “kill yourself and do the world a favour.” All of this was simply for pointing out ableist language and how it affects others.

I have since reactivated my account but the first thing I did was delete the tweet. I couldn’t bear to even see the tweet as I knew how much abuse was in the replies. Even now, two years later, I’m reluctant to share too much of my personal life or opinion for fear of abuse on that scale again.

What online harassment of disabled people ultimately aims to do is silence marginalized voices. Those who engage in this want to stop us from sharing our experiences, showing how intolerant non-disabled people still are toward disabled people. They should be ashamed, but instead they seek to shame us.

Activism and Advocacy

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Working and Studying at Home Shouldn’t Be Pandemic-Only Accommodations

Posted on March 24, 2020June 14, 2023 by Rachel Charlton-Dailey

The following post is part of our series on perspectives from disabled and chronically ill people regarding COVID-19. This post is not intended as medical advice.

As a disabled person with an autoimmune disorder, I of course find myself worried about being more susceptible to coronavirus. I’m concerned my recovery would be a lot more difficult. But here’s what’s also been on my mind: as a writer, I’m frustrated by how easily accommodations are now being made to allow people to safely continue working and studying from home.

I’m not saying these accommodations aren’t warranted in the time of a pandemic. We need to do what is necessary to prevent infection. But when these kinds of accommodations have been repeatedly denied to me and other disabled people, it hurts to see how easily they’re becoming the norm now that non-disabled people need them to be.

The reason I work as a freelance writer as opposed to a full-time writer and journalist is, quite simply, that society won’t allow it. My illnesses prevent me from being able to go into an office for 40 hours a week, and while I’ve been looking for more permanent roles for a long time, I’ve always been told that staff writer jobs can’t be remote. I’m told that I need to be in the office to work with the team. But now, the very businesses that turned me down and told me I wasn’t good enough are proudly boasting that they’re allowing their staff to work from home to protect them. Why, then, couldn’t these accommodations have been made for me or many other disabled people?

Take Ruby’s story, for example. She is a call center agent who lives with a host of illnesses including fibromyalgia, myalgic encephalomyelitis, and asthma. In her five years’ experience she had always been told that working from home would pose too much of a security risk and would create too much work for her employer.

“I’ve asked about the work from home policy in my current role, as my chronic pain condition fluctuates,” Ruby said. “Having some flexibility to work from a comfortable environment during flare ups would give me a lot more energy to give my best work, and reduce my time off. It’s always been denied as the equipment isn’t there to offer that to everyone.”

She goes on: “Since the coronavirus has progressed, though, our office has suddenly issued everyone laptops and headsets within just a few days. It doesn’t feel great to see that a medical issue had to have the potential to impact my healthy colleagues before our office would offer working from home arrangements. And, I’ve got a feeling that after the virus settles down, we’ll be back to business as usual.”

What Ruby shares resonates with me. While I was studying at university, I was going through a tough time with my mental health. When I started falling behind, I asked if I could work from home as going to class made my anxiety worse. I was told it wasn’t fair on other students. When I missed too many classes, instead of reaching out to me, my course leader rang my mother (listed as a next of kin) to get me in trouble, which was incredibly infantilizing considering I was 23 at the time. I subsequently failed my degree and didn’t graduate. I can’t help thinking about how different it would’ve been if I’d have been allowed to study from home.

Dreana, a former student whose illnesses include asthma, Ehlers Danlos syndrome, Crohn’s disease and epilepsy, shares similar sentiments. She struggled to get help while in college.

“I was told that maybe college wasn’t for me,” Dreana said. “I was told that it wasn’t feasible for a small, private school to pull off those changes. And then, just now, they were able to convert all courses to online courses.”

Dreana reiterates that the isolation is a good thing, but reflects that “the message is very clear: it wasn’t urgent enough when only chronically ill and disabled students needed accommodations. It only became important enough to work on once the larger population was at risk.”

So many disabled people put themselves through more pain to attend work and classes that won’t accommodate us. We had to reach a breaking point to see these kinds of accommodations being made more broadly, which makes it feel that disabled people are deemed less worthy. My hope is that this pandemic sets a precedent for home-based working and studying and leads to serious discussions around how we can make businesses and schools more inclusive for not only disabled people, but everyone.

COVID-19, Emergency Preparedness, Health

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Brexit is Already Blocking Access to Birth Control

Posted on January 29, 2020June 14, 2023 by Rachel Charlton-Dailey

Birth control is a vital medication for those with reproductive health issues, but for those in the United Kingdom (UK), Brexit may be putting their access to this and other medications manufactured outside the UK at risk. There are different laws for drugs being imported between countries that aren’t part of the European Union (EU) compared to those inside it. Some companies are expected to struggle to keep up with changing manufacturing costs. And some disabled people are already facing shortages.

Around 3.1 million people in Britain use a contraceptive pill and rely on them to carry on their lives without having to worry about heavy, painful periods and debilitating ovulation. Birth control can regulate periods, allowing those who take it to have either a much more regular period or none at all. For those with endometriosis, polycystic ovary syndrome (PCOS), or generally painful ovulation, birth control is known to control pain. For those with premenstrual dysphoric disorder (PMDD), birth control can help realign hormones and stop intense mood swings. It can also help with the mental and emotional symptoms sometimes associated with reproductive health that aren’t always considered, such as migraines, irritability, trouble sleeping, depression, and anxiety.

Since having a hysterectomy three years ago, I was on the Sayana Press contraceptive injection up until October of last year. I took it to control my ovaries as I was still experiencing debilitating cramps and painful ovulation. It would get so bad that I would end up in the emergency room doubled over in pain.

However, when I was due my last injection in September, my doctor was unable to get it due to manufacturing issues. It was reported that there was an “interruption of supply” due to a manufacturing issue at the main Pfizer plant in Belgium, where Sayana Press is made. There was also a subsequent recall of batches in October because some units weren’t sealed correctly and could’ve faced contamination in transit, and some batches had an unreadable expiry date.

So, I had to take the generic Depo Provera version of the injection. I had painful cramps nearly every day for three weeks and on some days, could barely get out of bed.

The final straw was when I ended up in the emergency room the day before my honeymoon and almost missed my first vacation with new husband because of the pain. When given the choice, I chose to start Zolodex treatment which would induce a chemical menopause, knowing that I couldn’t live with the debilitating pain I was experiencing while taking the generic brand of the contraceptive injection.

A resupply of Sayana Press is expected in the first quarter of the year, but this also coincides with Brexit. And it’s not just Sayana Press that’s affected. People in Britain are already struggling to get hold of many of the most popular and common birth control pills. While the leading brands have confirmed there are problems in the manufacturing process, they are unable to give any indication of when it will be resolved.

Some manufacturing problems got so bad that the drug companies chose to discontinue the medication instead of trying to resolve issues. Two of the most popular versions of the “combined pill” (a contraceptive which contains the hormones estrogen and progesterone), Cilest and Loestrin, were discontinued in October, after months of manufacturing issues.

Doctors are advised to offer patients alternative generic birth control, but often patients aren’t forewarned about this. For many people with reproductive issues, birth control is an uphill battle that can take years, going through many different methods and brands before finding the right one for their body. So, a sudden change of birth control medication isn’t a safe option.

Take Cath, for example. After 10 years of pain, stress, scans, and trying many other forms of contraceptives, a gynecologist prescribed her Rigevidon, which has a lower dose of hormones than other combined pills. She also has epilepsy.

“My periods are extreme,” says Cath. “I can fill a menstrual cup in 1-2 hours and this lasts for 2 weeks. The pain was unbearable. I used to faint, have seizures and I couldn’t walk. I was prescribed Rigevidon so that I can live normally again. It’s vital for my quality of life.”

As Cath relies on her pill so much, upon seeing online that there were potential shortages, she consulted her pharmacist. “They said it was taking longer to get some medications and they were already stockpiling. They gave me an emergency dose while I waited for the full amount. In the end it took nearly a whole month instead of the usual 3 days.”

Cath was offered an alternative combined pill, but having dealt with this pain and stress for 10 years she was understandably upset. “They know my periods caused a mental breakdown before, so to try and suddenly change it like that is irresponsible and negligent care.”

It’s hard enough to be believed when you tell medical professionals that you have chronic reproductive problems and pain. The average time from start of pain to diagnosis of endometriosis is 7 years, with some taking over a decade to get a diagnosis.

I struggled for years to have my pain taken seriously, with many doctors dismissing it as just a painful period. The worst insult I ever received from a doctor was “maybe this is just the level of chronic pain your body needs to get used to.”

As a disabled person, the thought of suddenly being given a new pill after finally finding one that works is a terrifying idea and one that would certainly cause me distress. It feels like having a safety net suddenly pulled out from under you. There’s no certainty as to what will happen with medication manufacturing after Brexit, but the way its already going makes it clear that disabled people are bound to suffer.

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