As we mark Disability History Month, this is an opportunity to shine a spotlight on those within our own community to share their experiences of disability and of being a carer. As the newly-established network at LSTM we are working towards bringing visibility and support for colleagues who need it. To find out more about the Disability and Carers Network, please contact the co-chairs Kelly Johnston, Lauren Sandford and Philip McCall.
Kelly Johnston, Tropical Disease Biology
I recently watched the film Killers of the Flower Moon, set in the 1920s, in which several of the characters are living with the ‘wasting’ disease, diabetes. As someone living with type 1 diabetes, it was a stark reminder that, at that point in our history, it was a fatal disease.
Things changed dramatically with the development of insulin as a treatment, and it has now been 100 years since Frederick G Banting and George Macleod were awarded the Nobel Prize for Physiology or Medicine for this discovery.
In the film, we see an early adopter of insulin injections, and it took me back to the initial days following my diagnosis when I had to use a syringe and needle to inject insulin twice a day. Thankfully, the treatment and technology have moved on. I now use a pump for delivering insulin, but, arguably, the biggest recent advance has happened around blood sugar testing. Rather than using finger-prick samples multiple times a day, individuals can now use a sensor on the skin to access real-time levels and dynamics, which has been life-changing for many.
Type 1 diabetes is a recognised disability. As a child and teenager, I would never have accepted this label; diabetes was not going to stop me! As an adult and especially now as a working parent, I am much more at ease with recognising the impact it has on my day-to-day life.
Aside from the physical symptoms of blood sugar levels going awry, the biggest impact is the cognitive demands it places on an already very busy brain. This is, I feel, the area of diabetes that is not widely understood by others.
There is so much more to diabetes management than just taking insulin and being careful with food. It involves constant decision-making, which can lead to fatigue, stress and low mood, all of which can then also impact diabetes management! Recent advances in technology have made this easier; I now use an app that connects the pump with the blood glucose information to refine insulin delivery and respond to fluctuations.
Type 1 diabetes is an invisible disability (although, in my case, you may spot a sensor or insulin pump if you look closely) and this is why I became involved in the Disability and Carers Network at LSTM. It is important to raise awareness that many people are living and working with chronic illness and may need support.
Benjamin Munns, IT Services
Living and working with a chronic illness and mental health issues is a complex journey marked by daily challenges, resilience, and the constant need for self-care. Grappling with both physical and mental health concerns navigate a delicate balance between my well-being and the demands of everyday life.
Managing my chronic illness often involves meticulous attention to health routines and medications. From dietary restrictions to regular medical appointments and having to integrate these aspects into my daily life. This can create a perpetual juggling act, as the unpredictability of chronic conditions may require sudden adjustments to plans, potentially impacting work, and personal commitments.
In the workplace, having a chronic illness and mental health issues I often face unique hurdles. Stigma and a lack of understanding may surround conditions that aren't always visible, leading to misconceptions about capabilities.
Conditions such as anxiety and depression may fluctuate, impacting my ability to concentrate, and being able to get to work early in the mornings. I think it’s important that workplaces can adapt and provide support around this – such as allowing a later start and finishing also later. Chronic illness and poor mental health are a vicious circle, and can cause each other to flare up now and again.
The emotional toll of living with chronic illness and mental health issues can be profound. Coping with pain, fatigue, and the emotional weight of mental health challenges can lead to feelings of isolation and frustration. Sharing experiences with others who understand the unique intersection of chronic illness and mental health can provide a sense of community and validation.
It is important that people are made aware of significant issues colleagues/friends may be facing, I find myself that some understanding and talking about these issues as well as workplace adaptions can make a difference between being able to cope and not being able to. In this case I would ask people to be made aware of both Disability History month (16th November – 16th December) and International Day of Disabled People (3rd December) which was marked earlier this month.
Laura Roberts, IVCC
You won't see this on my CV, but alongside my job as a Communication Manager, I am also one of the estimated 6.5million unpaid carers in the UK.
This Disability History month (16th November – 16th December) and following International Day of Disabled People (3rd December), I share my story to raise awareness of the unpaid work done by the 5 million people in the UK who, like myself, juggle caring responsibilities with work - that's 1 in 7 of the workforce. Unpaid carers save the economy £132 billion per year, an average of £19,336 per carer.
I've cared for my mother since the first wave of the pandemic back in 2020. The full extent of her care needs aren’t mine to share, but she now finds herself living with vascular dementia, Parkinson’s disease and dysphagia (a condition which causes problems with swallow).
As she continues to age and her care needs increase, my mother lives with my husband and me. We have become part of a silent army of workers who look after Britain's old in their own home.
Caring for an elderly parent in your late-30s isn't the norm. In my circle, most of my peers are in a very different life-stage, raising young families and pursuing their careers. While hugely rewarding, caring is also challenging, lonely and isolating.
My days often involve taking my mother to medical appointments, where I help her participate (in the extent that is possible for her) in decision-making about her care, while advocating for her needs. I am also responsible for my mother’s finances, her medication, her diary, and I manage the relationship with the care agency which support her with personal care, while also allowing my husband and I to continue working full-time.
My mother is now the dependent, in need of care, nurturing, supervision and guidance. Caregiving has reversed the roles in our relationship, and I am learning to navigate grief for the loss of my parent-child relationship with my mother.
My caring role has a significant impact on my career (and career choices), my earning potential, my social life, my marriage, and my mental health.
By sharing my story, I stand with carers. I believe the challenges of caring should be recognised in all areas of life, caring should be valued and respected by everyone in our society, and carers should have access to the information and support they need, where and when they need it.