Making research a place everybody can thrive

Dr Syed Mian, MDSF Young Investigator 2021, Senior Research Fellow in the Haematopoietic Stem Cell Laboratory at The Francis Crick Institute.

“You may want to start considering early retirement on medical grounds.”

Hearing those words for the first time from an occupational health professional was far from easy.

That moment marked a pivotal point in my life, one rooted in a journey that began in 2018 when I sustained a workplace injury. This injury has left me with chronic pain in both hands and led to a diagnosis of bilateral De Quervain’s tenosynovitis – a painful condition affecting the tendons on the thumb side of the wrist.

At the time, awareness of such workplace injuries, particularly in laboratory settings, was surprisingly low. Consequently, there was little understanding or support available for these conditions in work environment. Beyond professional challenges, I also struggled with day-to-day tasks. Life became increasingly challenging, and I was faced with a difficult choice: endure the pain and continue pursuing my academic career or relinquish a decade of hard work and a well-earned reputation in research to pivot to a different profession.

Despite these challenges, my passion for research and my personal connection to medicine – rooted in my childhood medical experiences – motivated me to persevere against the odds. In 2021, I joined the Francis Crick Institute, a leading biomedical research centre in London. Before accepting the role, I vividly remember an important conversation with my line manager about my condition and the accommodations I would need to sustain my career. It wasn’t an easy discussion – it’s always challenging to ask for help. However, the understanding and support I received from my line manager, colleagues and friends became a cornerstone of my ability to continue pursuing what I love: advancing treatments for cancer patients.

In my experience, there is a great deal of support available for individuals with disabilities, but it requires proactive effort to seek it out and ask for it. The scientific support at the Francis Crick Institute, including the occupational health as well as health and safety teams, has been exceptional – the best I’ve encountered in academic research. Unfortunately, this level of support is not universal across institutions in the country.

To thrive in the face of a long-term health condition, setting clear expectations – both for yourself and with your employer – is essential. While managing my career alongside my condition, I turned to the UK government’s Department for Work and Pensions and discovered the ‘Access to Work’ scheme. This program provides grants to help individuals with disabilities or health conditions secure practical support, such as specialized equipment, to stay in the workforce. For me, Access to Work was life-changing, enabling me to continue my career in academic research.

Although I’ve encountered occasional misunderstandings about invisible injuries, such instances are rare. Most people are willing to learn and support when given the chance. My journey has taught me that with the right resources, determination, and understanding, it is possible to overcome significant challenges and keep pursuing what you love.

Although the struggles continue, I am excited about the next chapter of my professional life, where leading my own research group will hopefully become a reality and I can continue to contribute meaningfully to ongoing cancer research, particularly in haematology.

My vision is to foster a culture of continuous learning and knowledge sharing among diverse stakeholders, including individuals with long-term conditions in academia. This approach aligns seamlessly with the creation of a cohesive and dynamic work environment where everyone feels valued, welcomed, and empowered to express themselves.

I’m writing this as I stare down the barrel of yet another grant rejection – par for the course in academia but made all the more difficult with ADHD.

Like all neurodivergent profiles, ADHD is a spectrum with many different traits. One of the features of my particular brand of ADHD is rejection sensitivity dysphoria (RSD), which means when I receive a rejection, I feel it amplified to a much greater level – I feel literal pain with every rejection.

This makes it so much harder to “get back in the saddle” and try again, because to me, it must mean there’s something fundamentally wrong with me. Of course, logically I know that isn’t true, but viscerally, it definitely feels that way.

Allied to this challenge is another trait in this ADHDer’s top ten hits: being unable to make myself do something until I’m on the precipice of a deadline. Try as I might, I cannot make myself care enough to start a task until it feels urgent. I’ve tried setting fake deadlines, mini milestone deadlines, even self-bribery with rewards, but to no avail.

It seems my best writing happens when it needs to happen right NOW! (Although I also know that’s not true either – on the rare occasions I do trick my brain into starting writing in plenty time, the quality of my writing is infinitely better. You would think knowing this would help, but it doesn’t…). Oh, and there’s another feature of my ADHD – the propensity to write something in parentheses after every statement (because every thought comes with a hundred different “side-thoughts”).

I was 40 years old when I discovered I have ADHD, and seeking support and adjustments has been a bit of a minefield. This is not through any fault of my employer’s – they’ve been fantastically supportive – but because the process of getting a diagnosis and the task of getting through the Access to Work paperwork, the counterintuitive need to ask for help and support and all that comes along with it, requires a LOT of form-filling – and that’s something we ADHDers don’t do well.

There’s another strike against the grant-writing process too – so many forms, so many different sections, all asking for slight variations of what feels like the same information… is it any wonder neurodiverse individuals struggle to excel in a research career?

So how do I overcome these challenges?

• I keep a “GOB file” – glimpses of brilliance. Every time I receive a supportive comment, an email containing any praise, or positive feedback in any form, I keep it in my GOB file. And when those rejections come, I return to my GOB file and remind myself that I am, in fact, a pretty marvellous human being – just one with a few extra challenges.
• Time-blocking is my go-to method of carving out the time I need to write. Even though I struggle to motivate myself when the deadline seems so far away, carving out the time to write particular sections helps. Or at the very least, makes me aware of what I’m not doing if I skip a scheduled session.
• I still haven’t got a diagnosis. There will come a time when I feel the urgency and will take action, but for now I’m choosing grace over guilt about this because much as I may wish I could do all the things, I know I can’t, and that’s ok.

I became disabled in March 1992 following an accident and spinal cord injury at mid-back level resulting in me being permanently paralysed from the chest down.

This was during my medical student training at St Bartholomew’s Hospital, London, and after a time of hospital rehabilitation I returned to medical school. I qualified as a doctor in 1996, worked as a hospital doctor in various specialties, did a period of research resulting in an MD degree, and eventually started work as a consultant medical oncologist in 2013. My site specialisations are breast and cancer of unknown primary.

I have managed to incorporate my involvement in research alongside my clinical role as a medical oncologist and I am principal investigator for several breast cancer trials at my district general hospital. Key trials to which I am currently recruiting patients are the OPTIMA study, HER2 RADiCAL trial and SWEET trial.

Measures to ensure that I maintain my health have enabled me to continue to do my clinical work, recruit patients into relevant clinical trials and have an ongoing role in research. These have included having time off work when needed, assessment of my workstation, altering my work schedule, and provision towards equipment.

About 4 years ago I had a musculoskeletal problem affecting my left shoulder. I had extreme discomfort, not just when in my wheelchair but also when lying down. After assessment and imaging to rule out rotator cuff injury and other causes of shoulder discomfort, it was concluded that my shoulder discomfort was due to muscle tension and spasm. I had to be off work for 4 weeks, most of which I had to spend laying down to rest my shoulders. I also had physiotherapy sessions which were provided by my employer to guide me on appropriate exercises to maintain my shoulder health.

My employer did a workplace assessment and concluded that the shoulder problem was contributed to by my desk being too high. As I cannot adjust the height of myself in the wheelchair, my employer bought electronically height-adjustable desks for my clinic room and office to enable me to lower my desk so that my shoulders were not raised and in tension when using the computer keyboard.

Virtual meetings and working from home for two of my working days have been particularly helpful by decreasing the time I spend travelling. This means fewer transfers in and out of my car, including lifting my wheelchair across me.

Having a lightweight custom-made wheelchair is essential. They are extremely expensive, the cost of my current wheelchair being almost £10,000. NHS funding in the form wheelchair voucher only covers part of the cost and a contribution from my employer and a grant through Access to Work means that the amount that I have to contribute is more affordable.

Spinal cord injury also affects my bladder and bowel function. Over the years I have tried different ways to manage this, but they were undignified and time-consuming. This was incompatible with continuing full-time employment, and work were very supportive in me having time off to have a colostomy operation in 2022.

Having supportive, collaborative and engaged colleagues in the Research and Development Unit to work alongside has been key in continuing to have a role in research. For this I am truly grateful.

When I was in primary school I was diagnosed with a severe form of dyslexia.

I still remember as a kid walking along the streets, looking at street signs and thinking, wouldn’t it be weird to be able to read what was on them. Due to the dyslexia lots of the teachers weren’t interested in helping and I had quite a turbulent start to my education. However, in time – due to the perseverance of my parents – I was very privileged to be admitted to Sunnydown school, a county council special-needs school in Caterham.

This was transformative. Its supportive, progressive and nurturing environment allowed me to start to develop my passion for science. This all feels like a very long time ago now and while my situation is very different, the dyslexia has not gone away.

Following school, I was advised that I should not do A levels, but do a BETC national in science, which I did and, importantly, its modular nature allow me to be exposed to biochemistry. I then went on to do a degree and a PhD in Biochemistry at Sussex University. I found the experimental work was perfectly suited to my abilities – hands on, molecular biology was what I was built for. I loved using the experimental tools we had available to us to understand how life works. On the very few occasions when you figure out something new the feeling is amazing.

The people during these years were incredibly supportive, during my thesis writing I remember one of my co-workers’ typing parts of my thesis while I dictated it.

Today my working day (when not in meeting, which are numerous) involves reading papers, reviewing grants, writing grant and papers, and editing, tasks that I never thought I would be able to do. The career progression of a molecular biologist can often take you away from the beloved bench.

Of course, nowadays advances in word-processing help reduce the impact of dyslexia with dictaphone functions and spell-checkers. However, they can only go so far and it still takes me much longer to write compared to my peers. As dyslexia is a non-visible disability sometimes people either don’t realise or forget and I find it can be hard to get access to equipment or help that would make things easier for me.

Additionally, there are perhaps less obvious impacts, for example names are an enigma to me. When it is something like John Smith then it is easy, however, they are often more unusual and I have no way of knowing how to read or pronounce them. When chairing a session at a scientific meeting I will ask co-workers to read the names out and record them so I can memorise them beforehand.

Emails are another constant challenge which I feel is getting worse and worse. The constant, deluge of them feeling like a continuous war. Of course, everyone is feeling this to some extent but for me it takes a significant amount of time to read each one. To combat this, out of necessity, if it is not instantly obvious I need to respond to it, it is deleted and this sometimes gets me into trouble. Today’s culture seems to expect that all emails are read in full and does not take into account individuals’ abilities.

Last year I went through my five-year review with CRUK. This requires quite extensive written documentation of both my past and future research plan, which as your job is dependent upon it needs to be as perfect as possible. I have a great support network at work, however the deadline for my paper work was just after Christmas and everyone was away. CRUK was incredibly understanding and allowed me an extension for my submission.

Thinking back over my journey so far, I think that while I had a challenging start to life, it has furnished me with some unexpected skills. I am not afraid to fail and know that I can get back up and push forward again. Determination and perseverance are critical in science with grant and paper rejections common place in this occupation. My start allowed me to just push forward and do my best.