Living on a Tightrope: Navigating Everyday Challenges of Type 1 Diabetes
Unpacking the Persistent Stressors That Shape the Lives of Type 1 Diabetes Patients
My friend, who prefers to remain anonymous — let’s call her Anna — was diagnosed with Type 1 Diabetes (T1DM) at the age of 17, becoming one of the 8.4 million people worldwide who live with this condition. Since her diagnosis, our usual greetings have been replaced by my constant concerns about her glucose levels.
3.7? Should I get your Rocket Candies?
As a non-diabetic, I must admit that I can never fully empathize with the daily struggles faced by those who live with this condition. However, even just listening to Anna discuss them is enough to make my skin crawl: imagine having to prick your fingers 4 to 10 times a day to monitor blood glucose levels, coupled with 5 insulin injections in the lower abdomen.
These frequent, painful interventions, though crucial, underscore the relentless demands placed on those managing this chronic disease. Given these challenges, it’s imperative to delve deeper into how they affect individuals’ well-being. In this article, we will look into the source of stress of Type 1 Diabetes patients, and observe its impacts into their day to day life.
Cause of Stress: Diabetes Self-management Regimen
Let’s first take a look at the daily regimen through an experiment designed by the JDRF (Juvenile Diabetes Research Foundation) to help put you in the lens of a diabetes patient. If you would like to venture a try, wear a rubber band around your wrist for the next 24 hours. Each time you encounter a reminder to ‘check blood sugar’ or ‘administer insulin’, snap the rubber band against your wrist.
“Living with type 1 diabetes is 24/7. There are no breaks, and it can be exhausting. ” — Alison, parent of teenager living with T1DM
But now, remember…
The temporary pain from the extreme highs and lows represented by the snap of the rubber band fades away after a while. However, that is not be the case for T1DM patients. As of now, there remains no cure for T1DM, a condition typically diagnosed in childhood that persists throughout one’s life. Managing this disease is particularly challenging as it requires precise care to prevent glucose levels from swinging dangerously between extreme lows (hypoglycemia) and highs (hyperglycemia) for an extended period of time.
Such fluctuations place patients at a heightened risk of severe long-term complications: 50% have/will have nerve damage, 27% have/will have diabetic retinopathy, and 33% have/will have kidney diseases. The reality of these threats demonstrates the critical need for vigilant and ongoing management of the disease.
Let’s first understand what physiologically occurs to the body when hyper- or hypoglycaemia take place.
Hyperglycaemia: Glucose Level is Too High!
Consequence #1: Diabetic Ketoacidosis (DKA)
- Normally, insulin assists glucose in entering the cells from the bloodstream, where it’s used as energy. Without sufficient insulin, glucose remains in the bloodstream, leading to high blood sugar levels.
- Sensing a ‘lack of energy’, the body will prompt the liver to increase glucose production through gluconeogenesis and glycogenolysis, pumping even more glucose into the bloodstream and raising it, compounding to hyperglycaemia.
- Simultaneously, the body begins resorting to breaking down stored fat to supply energy, a process that provides energy directly to the cells while bypassing the need for insulin. All sorted? Nope. The breakdown of too much fat leads to the production of acidic byproducts called ketones.
- High levels of ketones can acidify the blood, causing metabolic acidosis. Combined with high blood sugar, this disrupts the balance of electrolytes — essential minerals in the body that support nerve function and muscle contractions. If not taken care of immediately, the patient experiences severe dehydration, coma, and even death.
Due to the widely applicable symptoms of diabetes, about 50% of patients are admitted into the hospital and diagnosed while in DKA. This, unfortunately, exposes them to both higher risks of long term complications and economical burdens from treatments: $30,000 (median) per admission.
Consequence #2: Hyperosmolar Hyperglycemic State (HHS)
Enough insulin to prevent ketone production, but not enough to prevent severe hyperglycaemia.
90–95% of cases of HHS are found in T2D patients, and it is associated with a higher mortality rate estimated around 20%. Unlike DKA, which commonly affects individuals in their 40s, HHS is more prevalent among the elderly, typically in their 50s and 60s.
- There is enough insulin to prevent fat breakdown and ketone production (trademarks of DKA), but not enough to facilitate the entry of glucose into cells. Alike to DKA, liver continues to produce glucose through gluconeogenesis and glycogenolysis, further increasing blood glucose levels.
- As the concentration of glucose in the bloodstream rises, the serum osmolarity also increases as the blood becomes more concentrated than usual.
- To down the concentration, the high osmolarity pulls fluid from nearby cells into the bloodstream, leading to increased urination — to flush glucose out of the body with water.
- Staying hydrated is highly important in this stage. If not taken care of immediately, the dehydration can cause confusion and drowsiness before progressing into coma.
Hypoglycaemia: Glucose Level is Too Low!
If you thought hyperglycaemia is the worst it gets, you would be surprised to find that hypoglycaemia, is in fact, even more dangerous and more frequent for Type 1 patients.
How exactly is it worse?
Hypoglycaemia can occur very suddenly, often without much warning. In fact, symptoms may not reveal themselves until the plasma glucose concentration drops below 54 mg/dL, at which point the patient could pass out.
It’s also a little trickier to manage. Rather than calculating for a correction dose in hyperglycaemia, severe hypoglycaemia may require an IV followed by an infusion of glucose (unconscious), or the use of nasal glucagon (patient must be conscious). Furthermore, glucagon is dysfunctional in raising the glucose level if the patient has consumed alcohol within the past 24 hours.
If this approach towards hypoglycaemia is recognized early (via a Continuous Glucose Monitor), patients can choose to stabilize through consumption of fast-acting glucose, such as the Rocket candies, before intaking sources of complex carbohydrates.
Existing Tech & Opportunities
I’m sure we are all aware of the horrifying consequences of hyper- and hypoglycaemia by now. They are frequently caused by illnesses, stress, hormonal changes, changes in routines, and use of medication.
For example, when one contracts an infection, the body responds by releasing stress hormones such as cortisol and adrenaline, which increases blood glucose by stimulating gluconeogenesis and glycogenolysis and reducing insulin sensitivity. While on the other hand, prolonged nausea and vomiting can reduce food intake, hence increasing one’s chances of developing hypoglycaemia.
To reduce the stress associated with frequent finger pricks, Continuous Glucose Monitors (CGMs) have become a popular option, with 48% of type 1 diabetes patients adopting them in 2021. However, hesitancy persists, commonly due to the high cost of the devices (~$250 each, replaced every 10 days), discomfort from wearing them, and the social implications of carrying a medical device 24/7.
Anna, who – thankfully – recently transitioned to a Dexcom G7 CGM, has repeatedly expressed frustration with the challenges of correctly positioning the CGM. Incorrect placement can cause significant bleeding and result in inaccurate readings.
Another key area of innovation involves insulin pumps, which typically cost around $6,500 and facilitate continuous insulin delivery. Recent advancements include CGM-integrated insulin pumps, which allow continuous glucose readings to be sent from the CGM to the insulin pump, thereby adjusting insulin delivery according to glucose trends. However, a major limitation of the ‘artificial pancreas’ remains: most devices still require users to manually input mealtime boluses.
A promising development in diabetes management is the advent of continuous ketone monitors, which significantly enhance the quality of life for patients during illness.
Currently, SiBio is the only company with an approved Ketone Monitoring System, priced at approximately $100 each (replaced every 14 days). Companies like Abbott are beginning to integrate both CGM and ketone monitoring into a single device (no such device has yet been approved for use in patients < 18).
Impacts: Social Relationships
We can examine the stress associated with diabetes by considering the different types of relationships it impacts — family and peers. This stress is an extension of the burden imposed by complex disease management. For example, diabetes-related stress can manifest as low motivation or as deliberate decisions to engage in unhealthy behaviors.
50% of T1DM patients experience these stress-related challenges, which significantly increases their risk of depression — making them 5 times more likely to suffer from it. Yet despite these statistics, only 25–50% of these individuals receive the corresponding treatments.
Family Relationships
As a result of the emotional struggles, family members (even siblings) often take on additional roles as caregivers, which can increase stress and alter the usual family dynamic. Parents, especially, often experience anxiety and distress over the management of their child’s condition, which can affect their own mental health and trust with their child.
The impact of these emotional struggles is particularly prominent during adolescence, a phase when the desire for independence intensifies. At this stage, teenagers may seek more autonomy, while parents may still perceive them as not mature enough to manage their own care effectively. Protective behaviors, though well-intentioned, can often be perceived as overly protective or controlling, particularly by teenagers, turning them even more rebellious.
“When my mom saw a high blood sugar level, she nagged ‘I told you not to eat carelessly’. She also restricts me from eating. I can’t eat things that I want to eat. Why doesn’t she just lock me up at home so that I would not go out and eat? They thought if I don’t go out, my blood sugar will be better. I am very unhappy about this. So, I don’t want to test my blood sugar anymore.” — Participant #9
Peer Relationships
As human beings, our survival instincts drive us to seek acceptance in groups. However, living with a life-changing condition like type 1 diabetes can complicate this basic need. The meticulous management required — measuring food portions and injecting insulin in social settings — can make individuals feel self-conscious and hesitant to participate in social activities, potentially leading to social withdrawal or isolation.
Furthermore, deciding when or how to disclose their condition to friends and peers can be a source of stress. Even though it is 2024, there is still plenty of stigmatization or misunderstandings about diabetes, which can alter peer perceptions and interactions.
In Anna’s case, disclosing her condition to friends led to one of two cases:
- Started seeing Anna as her disease rather than her independent self
- Ignored Anna’s struggles entirely
I, too, am guilty of the first, made it my greeting every time we met. Luckily, Anna pointed it out to me.
Anna was diagnosed with type 1 diabetes just as she embarked on a documentary project with a partner. The transition involved sleepless nights, frequent clinic visits, and considerable emotional rollercoasters. Unfortunately, her partner – who fell under the second category – having never experienced the struggles, had a hard time empathizing with these challenges, causing the team to soon fall apart.
People with type 1 diabetes often find it challenging to relax and enjoy certain social events. Every activity involving food, drinking, or physical activity requires careful advance planning, making partying almost impossible.
Plan to drink alcohol? Must eat substantially because glucagon will be ineffective.
Plan to eat? Must calculate the carbohydrate contents correctly and 15 minutes in advance.
Plan to exercise? Must have food on hand to prevent low blood sugar.
Hanging out with Anna involves some extra preparation. Even for a simple meal out — where I would only bring a small purse — she would always arrive with a tote bag. It’s organized with zip-up pouches containing her essentials: insulin, a backup glucose meter, small needles, Rocket candies, granola bars…
But thankfully, Anna is a very quick eater and always finishes her meal before me — even though she has to wait 15 minutes for her insulin to kick in.
Final Thoughts
The tech landscape for T1DM is evolving at a rapid pace, introducing insulin pumps, CGMs, and many new possible treatments all within the past few decades. Despite these advancements, the existing solutions still fall short of fully integrating patients into societal norms without stigma.
Moreover, as these tech become more accessible in affluent countries, it’s crucial to remember the contrast in global healthcare. In developing countries, approximately 1.8 million T1DM patients face much harsher realities, with life expectancies of only 13 years for those diagnosed at age 10, compared to 65 in developed nations. This disparity highlights the urgent need for expanded access to diabetes care and tech worldwide, ensuring that advancements benefit all individuals equally.
