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And how would you rate your current pain and fatigue? It’s a Tuesday.

Posted by , on 10 May 2024

When I was 25 and having a particularly bad day, crying to my mum about how exhausted and in pain I was during my studies, she recalled a passing comment made about my 10-year-old self by a homeopath who was treating my brother. The homeopath looked at me inquisitively, and then asked me if I could walk up and down the corridor at a comfortable pace. His response: “She’s just running on nothing, absolutely no energy reserve”. This man identified an issue 10 years prior to any diagnosis, and a further 10 years to being properly assessed.

And I am still an incredibly slow walker.

I have spent the past year, and indeed, my first-year postdoc salary, going through the private medical system in order to be diagnosed for a myriad of conditions, some of which I’ve had my whole life. This includes, but undoubtedly is not limited to: repetitive strain injury in both wrists, chronic migraines, fibromyalgia, hypermobility syndrome/EDS, degenerative lumbar spine, hip sclerosis, autism and anxiety. I am now a clinical trial comorbidity nightmare, a badge I wear with pride, if only as gallows humour. Over this time, I’ve had the opportunity to reflect on how on Earth I have managed to get through the education system, as well as work in multiple academic institutes. Now, in a far more supportive environment than I have ever worked in, I feel secure enough in my position to say my piece about why the current structure of wet lab science is nigh-on impossible for people with energy-limiting conditions or mobility issues, never mind the two.

I am not one to be afraid of ruffling feathers, and as such can say that having worked or studied at now six universities and institutes, some of which are the best in the UK, not one has shown significant change to improve the state of wet lab science’s innate ableism despite proclaiming “inclusivity”. I have worked on stem cells in one capacity or another for almost 10 years now, and I have yet to find one lab that is disability-accessible even for minor difficulties, even in recently built buildings. Lab benches have a top shelf that is so high up that I need to climb onto a chair, then the bench and then lean up to simply retrieve a DNA extraction kit. I’m 5’6 and one of the taller women in our lab; I am almost certain the standard lab benches were designed by the same individuals who forgot women wear seatbelts. The benches are non-adjustable and are often too narrow to fit a chair in, never mind a wheelchair. Ergonomic pipettes are regularly not available, and heavy lifting and copious bending is expected, just to simply collect what you need. I’ve lost count the number of times I have scooted on my bum on the floor to organise a drawer or to find a reagent in a freezer, like a dog that needs to go to the vet. A large amount of arm strength is required to open -80 freezers and lift cell storage shelves out of liquid nitrogen. Last time I checked, powerlifting was not an essential requirement on the job description. And don’t even get me started about requiring a cane in the lab. Despite the infrastructure remaining steadfastly unchanged, many colleagues have provided kind words and helpful hands over the years, but when discussing the sheer commitment of lab work, well, everybody seems to think we are all in the same boat.

Spoiler: we’re not.

Now I did not get into academia thinking it was rosy. Academic careers are famous for the dedication required, so much so that it puts off even the most privileged and enthusiastic of individuals. Similarly, stem cells are renowned for being needy: weekends, holidays, anniversaries, Christmas. This would wear down anyone, but for those with energy-limiting conditions, this spirals into a whole different beast leading to professionally difficult conversations. I’ve tried my best to be open about my energy limitations to my superiors in the past and been met with disdain masquerading as advice, being told that I was lying or that I should keep quiet as it makes me sound “weak”. I’ve had my conditions leveraged as a means of bribing for loyalty, and even had my pleas for consideration misinterpreted as vying for sympathy to get deadline extensions or funding, rather than just asking for basic human compassion. I’ve collapsed in the lab on multiple occasions, slumped on the floor from sheer exhaustion trying to meet unobtainable demands, secretly thinking that if I end up in hospital at least I’ll have “a valid excuse” to rest. The irony was I was in hospital at one point, and was still asked if I could attend a scheduled meeting. Although this very much was an extreme case of a toxic work environment, to a lesser extent I’ve observed similar behaviours in most institutes, either to myself or others, where the fear of backlash about disclosing or indeed managing one’s health issues is valid and can come with very real consequences.

All I can do is keep what advocation available to me small-scale, within my limits, just so I can still do my job.

So how do we tackle this issue, and indeed, support both current and new generations of scientists? I don’t know and nor do I feel it is the total responsibility of myself and the people who are affected by this multi-faceted, systematic monolith of an issue to resolve it, because we’re already tired. There are those who are sounding the horn plenty and still are ignored despite putting their all into it (and good on them!). For me, I’ve gained a surprising amount from being vocally open about all the weird and wonderful aches, pains and idiosyncrasies that I experience to colleagues and seniors, being unabashedly afraid to talk about it. What began as me just being honest about my life at one institute has snowballed into me being the local disability sign-poster at each institute I frequent. I have had so many wonderful interactions with people with similar or indeed completely different difficulties, asking for advice on deadlines, how to handle management, how to get accommodations, and frankly the most important, just having a sympathetic ear. On reflection, these interactions have paved a road for me to not feel immense guilt about my limited engagement and advocacy on a grander stage. Plus, I have a crumbling spine, pounding migraines, diminished energy and a shot nervous system, and have eventually admitted that I need to cut myself some slack.

What people don’t realise is that this is not an inspirational underdog story, because I live in constant fear there could be no happy ending. My academic career could end just as it’s begun, because I don’t know if my body can continue working in the lab for another 10 years until I’m office bound. I go home after a 9-5 day in the lab and can spend 2 hours in a bath just to be able to sleep that night. I take entire medical kits with me to conferences to make it through and still collapse at the end. I have got stuck at my desk because my legs have stopped working after being on my feet for 9 hours. If I don’t have lab work, I have to work at home, because open office spaces are not conducive to productivity when you are stimuli-sensitive. Like many postdocs, I am expected to maintain the juggling act of being both a full-time lab researcher and a trainee PI. The problem lies when you wake up already at 40% rather than 100%; this no longer is a “difficult period in one’s career that everyone goes through”, it’s the marathon from Hell and, as I mentioned, I’m a slow walker.

Even by writing this article and attaching my name to it, this could be found by committees and unconsciously (or indeed consciously) used to exclude me from funding opportunities.

My greatest fear is that those who called me weak were right, that I will not make it physically. However, I am not paving anything by being quiet, so this seems as accessible a vessel as I can manage. In short, if I were to provide some advice to others with a long list of chronic and acute conditions, it would simply be to be defiant. I won’t deny that I haven’t had an impeccable support network of friends and family, but even as a child, I have always vocally refused to believe that just because something is the way that it is does not mean it is right. Additionally, the best motivation you could give me is to say that I can’t do something. I often feel I should write some apology letters to my school teachers who were not expecting such defiance from an 8-year-old. This tenacity, however, is the only thing I feel got me to this point and is my advice to everyone, regardless of your situation. Demand your space, be seen, and be unafraid of how it will affect your career, because, for some such as myself, you may not even have one if your accommodations aren’t met.

Just keep reminding yourself that you are worth the effort and that you deserve to be in the room.

And For Managers, Principal Investigators and Senior Staff….

For PIs wishing to be more supportive and inclusive, I’d advise taking a leaf out of my current mentor’s book. This individual once said “I care more about the people than I do the cells” and shows it by their actions. They will come in on weekends to cover tissue culture, finish experiments if any of us call in sick, is happy to cover for me experimentally for any doctor’s appointments, if necessary, all while juggling their own childcare responsibilities. I am not afraid in the slightest to talk about how I really am, if I’m struggling, or if I require any additional help, although it took me almost a year to truly instil this trust. I had been upfront about my conditions prior to even applying for my position, and they have pushed for every accommodation I asked for from the get-go. Although I am aware of my sheer luck at finding such a considerate leader, this should not be the case. I honestly believe the only way attitudes will change is from the inside and by senior individuals supporting and advocating for those they are responsible for. After all, it takes a village to build a lab.

Although I’d be factually incorrect to say no progress has been made, what facet of academia do you think has grown the most in terms of disability inclusivity, and what leaves much to be desired?

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