Visible Voices 2024

I joined City St George's in November of 2023 as a Senior Equality, Diversity and Inclusion Officer. Although my core remit surrounds race equity and intersectionality, I'm deeply passionate about all aspects of EDI and advancing social change and justice.

At 24, I was diagnosed with Stage 5 Chronic Kidney Disease (CKD), an illness that has completely changed my life and reshaped my identity. CKD is a chronic long-term condition where the kidneys are unable to function as they should.

This leads to a build-up of waste and toxins in the body, which results in a range of ongoing and acute symptoms such as difficulties concentrating, loss of vision, breathlessness, mobility difficulties, and fatigue to name a few.

For many years before being diagnosed, I experienced various symptoms and this condition remains ‘invisible’ despite having a very evident impact on my daily life.

As a Black woman living with a chronic condition, I have often had to balance my racial identity, how it has and continues to shape my experience of healthcare, and the 'invisibility' of my disability.

Despite research and improved treatment methods such as daily medication, lifestyle changes, renal transplants and dialysis, CKD remains without a cure.

I'm hopeful that this Visible Voice campaign will continue to shine a light on life after being diagnosed, raise awareness, and make others living with CKD feel seen, represented, and visible.

I enjoyed university and had excelled through school but found myself struggling with the lack of structure and couldn’t engage with my classes. I went to my GP to discuss fatigue and difficulty concentrating, but a poor experience discouraged me from seeking help from healthcare professionals again.

A traumatic incident in the summer following my first year sent my mental health spiralling. Accessing the university’s wellbeing services, we identified reasonable adjustments to help me academically and scheduled GP appointments to develop a treatment plan.

Things were still difficult but it became easier to immerse myself in university life – I joined several societies and sports clubs, volunteered, worked part-time, built a vibrant social life, and ultimately earned a first-class degree.

My career began in 2020, just as the COVID-19 pandemic brought the world to a halt. Navigating my first full-time job while also addressing the political turmoil, supporting vulnerable students, and advising the university through unprecedented change was difficult.

Though I didn’t have a manager, I did have the support of some really amazing staff and using Mind’s Wellbeing Action Plan, we worked together to identify useful adjustments and seek professional support.

For the first time, I felt empowered to explore how my upbringing and experiences shaped my perspectives and felt confident enough to challenge the professionals supporting me. This journey led me to discover the possibility of being neurodivergent, connecting me with a community that has been invaluable to me.

As I was leaving my elected role, I became seriously unwell. Though this was scary and frustrating, I finally got a diagnosis and concrete answers for years of unexplained fatigue, nausea, weight loss and pain that had made my life difficult. It took time to accept that I would be unwell for life, but now I can better advocate for myself and manage my health.

The biggest lesson I learned is that if you keep ignoring your body, your body will find a way to make you listen!

As of March 2023, 1.9 million people in the UK were experiencing long COVID. I am one of those people and in January 2025 I will have my 3-year anniversary of living with a mild form of this condition. This is not so rare – we know that 40% of people with long Covid have had it for more than 2 years.

Long COVID is an umbrella term that covers long-term health issues faced by people who were infected with COVID-19 and which cannot be attributed to another cause. The most common symptom is fatigue (in my case the only symptom), though it is also frequent to have difficulty concentrating, muscle ache and shortness of breath.

Fatigue manifests as extreme tiredness after physical or cognitive exertion or after heightened emotional states. There is a gradation in the severity of those symptoms. Some people have trouble getting out of bed and looking after themselves – even taking a few steps can be a challenge.

I am at the milder end of the spectrum. I can do most things – just less of them. I generally need to take breaks to lie down at least every two hours, to be able to keep going through the day. I can teach in person, but it may take me more than a day to recover from a 2-hour lecture. I also find it difficult to be in large groups of people.

Another aspect of the fatigue is that it is cumulative. So trying to push yourself just for one day or over a busy period can lead to a medium-term worsening of symptoms and potentially a bigger relapse – this has happened to me and was a huge setback to my recovery. After that relapse, around a year and a half ago, it appears that I have stopped getting better.

I am fortunate that I am in a job that can accommodate flexible and remote working and that I have a supportive line manager. With some adjustments I can work around my constraints and continue with most aspects of my job. I miss travelling for conferences and workshops and the more social aspects of work. The need for frequent rest breaks also limits my flexibility overall and makes planning for work or any other activities complicated, as there are only so many hours in the day.

I spend most of my hours at home and conduct almost all my meetings online. It feels weirdly similar to the period when we had lockdowns. We like to think that the COVID-19 pandemic has ended, with everybody keen to move on. But for many of us, the pandemic is in some way still ongoing.

In most cases, long COVID is a hidden disability. Sometimes when people see me in the office they observe that I look well, which does not always reflect how I feel. Or, if I am energetic in a meeting, this is usually because I took a long rest to make sure that I am ready for it.

Long COVID is an active field of research and a clearer picture of the biological mechanisms behind it is progressively emerging. Nonetheless, a lot is still not understood and there is no treatment available. Often people get better with time and careful management of symptoms – but there is no guarantee that this will happen or how long it will take.

Having this condition has forced me to reflect on some things, relating not just to the precarity of our heath, but also on how the way that disability is experienced is formed by our social environment. I am aware that if I were in a different job, it is possible that I would not have been able to continue working.

I have been touched by the kindness and understanding of colleagues and the wider academic community. But I am also mindful that, besides my experiencing this – still mild – long-term condition, in practically all other ways I belong to the intersection of demographically privileged groups. The institutional support I have received, as well as the economic and social resources I can draw on, are not necessarily available to others with the same condition.

I fear that many sufferers of long COVID do not feel able to be seek support – or if they do, there is none forthcoming – and are therefore at risk of deteriorating health, social isolation, and economic precarity. In addition to progress with medical treatments, a wider understanding of this very common condition in essential.

I’ll admit that I wasn’t keen on starting university at first. I had undiagnosed ADHD for my entire childhood and that, paired with a physical chronic illness, as well as the setbacks from COVID-19, made me feel as if i was always a step behind everyone else.

Choosing to study in a creative field with a Music degree, there’s always that fear of becoming the ‘broke artist’ or that future employers, friends or family wouldn’t take you seriously, that it’s not a ‘real degree'. Regardless, I pushed those fears aside.

Don’t get me wrong, university is hard, balancing uni life with my personal life, navigating friendships and academic struggles. The only thing that has truly changed is my attitude.

In previous years, I was often made to feel like a burden for my issues, for misunderstanding things, and needing more help at times. I was often bullied or excluded and as a teen, I became a selective mute, not saying or doing anything to draw attention to myself.

The reality is you gotta make some noise to be heard. So, I went from the kid in class who never used to talk, to the kid who never shuts up! I got involved as much as I could, in societies, work opportunities, events, and loved every minute of it!

Getting my diagnosis’s, the relevant support and putting it all into action was never going to be an easy process. You’ve just got to take the brave first step of reaching out.

Helping others has become a huge part of my life and in October 2023, I created the Neurodiversity Society for City bringing together students who have gone through similar experiences.

My experiences at City have made me realise that I love learning, meeting new people, and showing what I have to offer to the world!

If there’s anything you can take from all this rambling, it’s that authenticity is admirable, and if you’re a good person, good people will always find you.

Facing the Challenges of Polycystic Kidney Disorder

In September 2022, at age 61, I was diagnosed with polycystic kidney disorder, a condition where fluid-filled cysts impair kidney function. For five years prior, I had raised concerns with my GP about fluid retention, fatigue, and random back pain. Unfortunately, my GP attributed these symptoms to high blood pressure and being overweight, and no further investigation was conducted.

It wasn’t until a routine check-up at a Well Man Clinic that my condition was identified. Blood tests flagged an issue, prompting an urgent review of my medication. This led to a scan that confirmed the diagnosis. Soon after, I met with a nephrology consultant who explained I had chronic renal failure with only 13% kidney function remaining. Dialysis would be my next step.

Adjusting to Life on Dialysis

To prepare for dialysis, I underwent surgery to implant a fistula in my left wrist. By January 2023, I began attending dialysis sessions three times a week, each lasting over four hours, plus additional time for setup and disconnection. During each session, around 3.5 litres of fluid that my body can no longer process is removed, and my blood is cleaned of waste products.

Dialysis has drastically altered my daily life. I am on a strict fluid intake limit of just 750 millilitres a day, which is incredibly challenging. Side effects include anaemia, low haemoglobin levels, and sudden drops in blood pressure, especially if too much fluid is removed. Despite these challenges, dialysis is keeping me alive, and I am incredibly grateful for the care I receive.

Finding Strength in Community

One surprising positive from this experience has been the sense of camaraderie at the dialysis centre. Meeting others facing even greater challenges has fostered a supportive, if unconventional, community. It’s a humbling reminder of the resilience we can find in shared experiences.

What Helps Me Thrive

My long-term goal is to reduce fluid retention enough to become eligible for a kidney transplant. Until then, I am committed to raising awareness about polycystic kidney disorder and other renal issues, so others don’t have to endure the delays and discomfort I experienced before diagnosis.

When asked if I consider myself disabled, I often use the analogy of a rotten pineapple: shiny on the outside, but with serious issues inside. This analogy reflects an important lesson—most disabilities are invisible, and we should approach others’ struggles with empathy and an open mind.

I received my official ADHD diagnosis late in life at the age of 44, however, the real change took place when I started to realise that I was neurodiverse 4 years earlier. I still remember that lightbulb moment followed by a wave of understanding and self-forgiveness that enveloped me when I discovered that there wasn’t ‘something wrong with me’, like I had always felt and been told, but that my brain just worked differently to others. Suddenly all the struggles I had experienced throughout my years of studying and working made sense.

City St Georges was the first place of work where I felt safe to share my self-diagnosis of ADHD and I felt fully supported by my line manager. I remember one of the first meetings that I joined when I started was led by a colleague sharing their experience of being on the Autism spectrum and that really highlighted to me just how inclusive and open my department was. This has always stayed with me, and I’m pleased that I can now share my story to potentially help other staff and students feel comfortable sharing their uniqueness.

Looking back on my life before I became aware of my neurodiversity, I believe that intersectionality played a huge part in how I was treated throughout my years of studying and in past work environments. Being both Black and neurodiverse meant that I was often not taken seriously, was excluded from groups, and was not offered the support and grace that other students or colleagues received, whilst also dealing with micro-aggressions, and at times, overt racism. Understanding my neurodiversity whilst also embracing my race and culture has formed a huge part of me becoming more of who I am unapologetically.

Having the support and space to do so within my department has allowed me to grow both personally and professionally and for the first time in my life I feel fully accepted by myself and others. This is also now reflected in the way that I manage my team and support students, and I can see how my own uniqueness and experiences have added value to what I have to offer others and the institution. I believe the more we share our stories and normalise the diverse experiences of staff and students, the more we will all feel comfortable giving and receiving the support and grace we all deserve.

I’ve faced autism head-on, no shortcuts, no holding back. Weekly speech and language therapy? Check. School classes? Sure. But the real test? Stepping into the world and learning firsthand. Lost friends, faced tough challenges—but each one sharpened me, pushed me further.

Ten years of breaking limits, proving to myself and others that action speaks louder than anything else. I’ve cycled from London to Windsor for the National Autistic Society. Swam 3.25 kilometres for Great Ormond Street Hospital. And I’m not stopping. Why? To show everyone—myself included—that with relentless determination, nothing can stop the tank of success.

I have quite a lot of direct experience of disability and mental and physical impairment in my life: various close relatives have from time to time lived with acquired physical disabilities due to injury, Parkinson’s, cancer and dementia.

My son is autistic. And I myself have lived through significant periods of depression across my whole lifetime since boyhood. I don’t see these experiences as exceptional or unusual.

Instead, I find it a bit strange that in our society we treat these things as departures from the norm, seeing a sort of radiant physical health and unalloyed cheerfulness as typical. No one’s life is a series of filtered Instagram pictures – not even influencers really live that way!

I have known periods of real suffering in my life, times when I have been barely able to put one foot in front of another. I don’t want to pretend that these are anything other than horrible. But I do think they have been valuable to me.

My depressions are usually telling me something important about things that are objectively wrong in my life – trying to live a life which clashes with my values and my needs in some important way leads to trouble.

They also remind me of our common fragility and vulnerability. I think I have learned some empathy for others from my experiences. They raise important questions about what really matters, and who really matters.

In my life with disability and impairment, personal or in the lives of those around me, I have also learned important things about injustice, institutional carelessness, and leading based on values.

Too often, people’s struggles are made worse by institutional failings, some through accident or oversight, some caused by deliberate choice.

I expect I will have struggles like this all my life, especially as I age. What I am trying to do is to live through them better; learn from them; and use them in the service of others. Friendship and collegiality help.

Literature and the arts help. Curiousity helps. Love and care help. Honesty helps. Pretending that struggling is shameful, exceptional and rare is dishonest, and unhelpful.

As a student who suffers from two chronic illnesses, endometriosis and adenomyosis, I wasn't sure if university was for me. However, I was not going to let these diagnoses stop me from pursuing a degree in something I have always been passionate about.

At the age of seventeen, I was diagnosed with adenomyosis and endometriosis, conditions I had never heard of prior to my diagnosis but pain I had been suffering from since the age of twelve. It really began to affect me at the age of sixteen, just a few months before I was due to sit my GCSE exams.

I was quickly left bedbound with pain, often missing at least one day of school a week, something which really took a toll on my confidence as I was always used to aiming high and getting really good grades.

It was at this point that I realised as challenging as this experience was for me, it was an opportunity to really learn about all kinds of chronic conditions and a chance for me to quickly become a fierce advocate for women's health, which so desperately needs to be spoken about more widely.

While this was a hard pill to swallow, it taught me to appreciate the good days and always take any opportunities that do come my ways because health is wealth! And if you can do something, don't let it pass you by!

While a sixteen-year-old version of me was without a diagnosis and suffering from high levels of pain, I cannot say that levels of pain have changed now, two years later.

The key takeaway I have had to take is that chronic illness is personal; no person's pain is the same, and therefore, it is important to understand my body, what I can and can't do and set boundaries for myself that will mean I can make the most of my university experience.

Only starting in September 2024, I have already faced challenges; missing lectures, having to continuously explain myself, and even struggling to make it to an exam.

While this is not the start I was hoping for at university, it is my reality, so instead of dwelling on everything that isn't going well in my life, I have learnt to embrace this part of my life as it is an opportunity to speak out on something that so desperately needs more attention.