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To Accept My Chronic Condition, I Needed To Grieve The Life That Could Have Been

Three years ago, I started seeing a nutrition therapist to work on my relationship with food, which had suffered for years in connection with the type 1 diabetes I'd been living with since age seven. A few minutes into our first session, she asked me a question no one ever had before: "Have you ever grieved having a normal relationship with food?" A silent flood of tears answered for me. 

That question began my inquiry into what I'll call diabetes grief: the profound emotional impact of what you lose when you're diagnosed with diabetes. That simple question created a tender, dignifying space—in the conversation with my therapist and, more profoundly, inside myself—for a loss that had never been acknowledged in my world until then. 

I didn't even know that I could grieve what I lost to diabetes until that moment. We don't typically think about grief this way. We grieve people and pets. There's a common misconception that you get a diabetes diagnosis, feel down for a bit, and move on. But a chronic illness like type 1 or type 2 diabetes can reshape fundamental aspects of your reality, much like the loss of a loved one. We lose bits of the life, the body, the identity, the ways of moving through the world we once had.

My grief journey started with that appointment, after years of it being stinted and stifled. I had never made space for, supported, and honored that process. My grief had only sputtered out through the cracks in fits and spurts of repressed rage and hopelessness. Looking back, this looked like simmering resentment when I struggled to get through a high school swim practice or college party with normal blood sugar, or the anguish of not being able to find the peaceful connection with my body I craved. 

I spent my teens unwittingly stuck spinning around the five stages of grief model proposed by the psychiatrist Elisabeth Kübler-Ross: denial, anger, bargaining, depression, and acceptance. (While the stages aren't necessarily linear and don't neatly map onto everyone's experience, I've found it a useful framework.) I would neglect to test my blood sugar, and try to eat like everyone else (denial). I would get so, so seething mad—at what, I didn't know (anger). I would pray to God to take my diabetes away if I was a really "good" diabetic (bargaining). I would fall into pits of despair about the unfairness of it all (depression). I wouldn't know acceptance until much later.

Without the awareness, tools, and safe space for processing to support myself, I tried to suppress and numb this all out—instead of honoring my grief, letting it move and express itself through me. The masses of unprocessed grief were left stagnating in my system. 

When I heard that question from my nutrition therapist that day, it spoke directly to the parts of me that had been holding this heaviness for years, and let them know that someone was listening now. That I was listening. It gave me compassionate permission to delve into a sorely needed, conscious grieving process. 

The first step was reckoning with all I'd lost and never said goodbye to. The losses didn't all occur the day I was diagnosed, of course. That's the nature of grief associated with a chronic condition—it comes in waves as you move into new stages of your life and meet new losses. 

Losses like that easy, innocent relationship with hunger and eating—the ability to look at a plate of food without thinking about how many carbs are on it—and so much more. I also lost a "normal" and carefree childhood, one where I ate cake at birthday parties, went on all the school field trips, felt like I fit in with the other kids, and played soccer games with no worry. A sense of trust in my body. An ability to survive without medication and medical equipment. A sense of carefreeness about life and the vision of the future I had. 

Eventually, my long-neglected grief started flooding forth. And when it hit, I held it in loving awareness this time, as best I could. I held a lot of space for my feelings, supporting their gentle unfurling through expression, letting myself sink into them, feeling them. 

I wept. I processed through journaling. I spilled onto the page everything I was feeling—indignant about, sad about, hurt about, confused about. What I was pining for, sorry for, deeply missing. I let myself get really angry—like, beat-up-and-scream-into-a-pillow angry. I made a list of all the things diabetes took from me, just to do my grief the honor of naming it in detail. I had conversations with my inner child and inner teen, the ones that never got to properly mourn. I gave myself full permission to stew in the unfairness of it all. I had a tenderness for myself. And I gave it time. Lots and lots of time. 

Only you know what you have to grieve in the wake of diabetes, and when, and how. Maybe you'll want to grieve having perfectly smooth fingertips. Or the identity of being a "healthy" person, or someone without a chronic illness. The luxury of eating whatever you want, whenever you want, without a second thought. Arms and legs free from injection bruises. The freedom of leaving the house without packing your insulin and glucose meter. The innocence of never before having come into close contact with your own mortality.

The grieving process can be long and dark, but going through it is what allows you to arrive in a beautiful new place: that ultimate stage of acceptance. There was no day I woke up and thought, Yup, I've fully grieved everything I lost to diabetes. It happened in layers of letting go. 

For me, acceptance means being fully in touch with the depth of what I've lost. No minimizing, no denying. It means releasing the grip of hoping and fighting for what was. Loving and living the life I actually have, not the life I wanted. Turning from what I no longer had to what I do have. From the past to the present and the future. Moving through grief and landing at acceptance allowed me to embrace my current reality, my current identity. To have eyes and energy for what is here. 

There's a quote about grief I always loved, from the author Jamie Anderson: "Grief is just love with no place to go." Acceptance allowed me to see all the places this love could go: into the body, the life, the relationship with food, the sense of self that I do have. I could pour this love back into myself, as I am. My imperfect, challenging reality, as it is. 

After I thoroughly honored what I lost, I could start to see and welcome what I'd gained. A deep well of knowledge and caring about my health, which first led me into health journalism and now a new career in coaching people with diabetes. A story to tell: I started writing about my experience and sharing my story with others in a way that felt so deeply fulfilling. A beautiful opportunity to reconnect with my body. A chance to educate people about a very misunderstood and stigmatized condition. A challenge to speak up for myself and state my needs. A sense of purpose: to help other people with diabetes feel more love and wholeness. 

What I want to leave you with is this: If all that sounds far away, know that being with your grief is all you need to do right now. There is no timeline, no neat series of events that are supposed to happen. You're not supposed to get anywhere. You're supposed to be where you are. And honor your loss. And feel your grief. And your bittersweet pathway to acceptance will appear in its own time. 

Related: 

Taking A Holistic Approach To Diabetes Treatment

The other main treatment is insulin therapy. Photograph: Justin Paget

Traditional treatments for diabetes involve stimulating the insulin producing beta cells in the pancreas to work harder. Over time this results in cell burnout and the reduction in the number of the vital beta cells.

The novel approach being taken by Ulster University spin-out Dia Beta Labs instead focuses on preventing and reversing the loss of beta cells. Rather than forcing the cells to work harder, it allows them to rest, repairs damaged cells and stimulates the proliferation of new cells.

"My background is in community pharmacy," says Dia Beta Labs chief executive Ryan Lafferty. "I had been doing that for a couple of years when I took a bit of a left turn. I got involved in a start-up company in Dundonald Hospital which was dealing with people with diabetes. That piqued my interest. I went back to Ulster University and did a research project on diabetes for my PhD."

That saw him working with the diabetes research group based on Ulster University's Coleraine campus. "In the course of my PhD I looked at therapies for type 2 diabetes and obesity. I looked at a specific hormone and how it interacts in the body and how to reverse engineer it to bring about positive impacts within the body. Halfway through my first postdoc the idea of a spin-out came about."

The company started life in the university's iCure business accelerator which helps entrepreneurs take research from academia and make it commercially viable. "I went through a market validation process where I went out to industry and healthcare professionals to validate the idea. That helped whittle down the assets we had in the research group to three therapeutic assets. The research group has been running for 30 years; Dia Beta Labs was established last October. We raised stg£450,000 to progress work on bring the first therapeutic candidate to pre-clinical trial."

Ryan Lafferty, chief executive, Dia Beta Labs.

A need for longer-lasting benefits

He explains that the problem with current therapies is that they only tend to work well for two or three years. "Patients discontinue them because of side effects or loss of therapeutic benefits in terms of blood glucose control. There is a clear gap for something with more long-lasting benefits; 80 per cent of treatment costs come about through side effects of diabetes like sight loss, amputations and so on. If we can repair the process and restore function it can have much longer lasting effects."

The other main treatment is insulin therapy. "A lot of patients end up on that. But it is a difficult medication to take, particularly if the patient goes on it later in life."

Investigations to date have produced data to support that the Dia Beta Labs therapeutic peptides will help patients to hold on to cell mass for much longer. "As diabetes progresses beta cells continue to die off and a patient can lose 70 per cent of the cell mass over 15 years. This is because the body tries to manage glucose levels and the only way it knows how to do it is by making the cells work harder."

On the other hand, it has been shown that healthy patients can increase insulin production at times of high demand. "The pancreas is quite a plastic organ. One of the best examples of its responsiveness is pregnancy. The beta cell mass has been shown to expand in response to the increased demand placed on the pancreas."

The potential to cure diabetes

That led the Ulster research team into some interesting areas. For example, there are ways to stimulate other cells to transform themselves into beta cells and there are ways to stimulate new cell formation.

"There is a complex interplay between the mechanisms, but they all contribute to increased cell mass," Lafferty adds.

The aim is to develop a first-line treatment for type two diabetes. "Our ultimate goal is that the therapy does its job so well that the patient can eventually cease taking it. This will lead to recognition of diabetes as a condition that can be cured as opposed to just managed."

He describes the journey to this point as incredibly long with the research group dating back three decades and his own PhD going back more than six years ago. "We hope to have our first-in-human trial in 2025 and to have a treatment on the market by 2030."

Lafferty explains that the company will likely need a development partner from the pharmaceutical industry to bring the therapy to clinical trial. "The big multinational pharma companies have the chequebooks to take new therapies through the later stages of development and bring them to market. They want them to be significantly de-risked before they invest. A lot of the major pharma companies have been restructuring and downsizing their R&D divisions. They are partnering with smaller organisations instead. The nature of the game now is that small companies are going to the major pharma companies asking them to partner with them. We have been speaking to potential partners already."

Medical Students Lose Their Empathy—here's What Can Be Done About It

A lack of empathy in healthcare can be disastrous. In the UK, between 2005 and 2009, hundreds of avoidable deaths occurred at the Mid Staffordshire NHS Foundation Trust. The Francis report, which investigated the causes of the failings, concluded that a lack of empathy contributed to the catastrophe.

More recently, dozens of tragic, unnecessary infant and maternal deaths occurred at the Shrewsbury and Telford Hospitals. The Ockenden Report, which investigated the causes of these deaths, stated that lack of empathy exacerbated the problem.

Meanwhile, research suggests empathy in doctors may even reduce premature death in patients with type 2 diabetes.

Empathy is a core skill that medical students require. The General Medical Council, which sets the standards and outcomes for medical student education and training in the UK, says that empathy is central to their strategy.

However, a "hidden curriculum" in medical school can reduce medical student empathy. A new study, published in BMC Medical Education, is the first to systematically demonstrate why empathy declines during medical training and raises important questions about the priorities of current medical education.

Empathy is known to reduce patient pain and improve their satisfaction with care, and protects against doctor burnout. It's also cost-effective according to a study that compared longer, empathic consultations with standard consultations.

Based on its importance, you might hope that empathy increases throughout medical school. Yet levels of empathy in medical students often decline as their training progresses.

In a recently published systematic review, my colleagues and I analysed data from 16 qualitative studies and 771 medical students. Our review included any qualitative study that investigated why empathy might change during medical school.

We found that when medical students transition from the first phase of medical school which is mostly lecture based, to the second phase of medical school which is more clinical and patient-facing, they are met with a "hidden" informal curriculum.

This curriculum includes subtle, non-formal influences over students. For example, there is often an unbalanced focus on the biomedical model of disease, which focuses on the body as a machine, over the "biopsychosocial" model of disease, which includes biological, psychological and social factors.

But also the way that the curriculum is structured to create a stressful workload, and to promote the influence of role models (who may show little empathy themselves) has an effect. Students, who are likely to have little experience of what being a patient is like, often adapt to this hidden curriculum by developing cynicism and becoming emotionally distanced and desensitised. This, in turn, lowers empathy.

Like all studies, our review has some limitations. The studies included in the review were small, very few were from outside Europe or North America, and many were of limited quality. However, the remarkable consistency of the identified themes warrants rigorous efforts to reverse the empathy decline.

By bringing the cause of empathy decline to light, our study paves the way for educational programmes that foster, maintain and even enhance empathy in medical students. These interventions are described briefly below.

Having students "walk a mile in patients' shoes", for example by having them spend the night in the emergency room, or wearing age simulation suits. Providing students with the experience of what it is like to be a patient will provide them with a more empathic perspective.

Balancing the focus on the biomedical model with education on the more holistic biopsychosocial model of disease. Patients are increasingly complex and come to see their doctors with intertwined physical, psychological and social problems. The biopsychosocial model is better suited to understand and treat these patients.

Getting real patients into the classroom when students are learning facts about the body. By combining patient stories with facts about the human body, their subsequent transition from the lecture theatre to clinical placements is less of a shock.

Evidence-based and effective empathic communication training. While all medical schools teach communication skills, the effectiveness of the training varies. Empathic communication skills have been shown to be effective and include expressing understanding, non-verbal behaviour (nodding, leaning forward) and optimism.

Role-model training and peer support. Role models are known to have a strong influence on medical student behaviour, yet the extent to which doctors display empathy varies. Enhancing the empathy of the doctors that students meet will therefore promote medical students' empathy.

Implementing these empathy interventions is difficult given the pressures on the tightly packed medical school curriculum. But it is possible. The Stoneygate Centre for Empathic Healthcare at the University of Leicester is currently developing and piloting all of them.

Empathy benefits patients and practitioners, yet it declines throughout medical school. Now that we have identified the causes of its deterioration, medical schools can focus on curriculum interventions that enhance it.

This article is republished from The Conversation under a Creative Commons license. Read the original article.

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