The burden of type 1 diabetes isn’t just the threat of long-term complications, or the day to day grind of micro analyzing your insulin to carb ratios and your level of activity. The greatest burden of all, in my opinion, is an emotional one. While the aforementioned factors play a significant role in creating that emotional burden, this knowledge doesn’t absolve us of the burden itself.
The feelings of helplessness, of failure, and the creeping sentiment that we are living on borrowed time — that we are time bombs ticking our way to self-destruction — are internal realities all type 1 diabetics face. Sometimes these spells are fleeting, and other times, they’re like gum on your shoe.
I am a huge advocate of specialized therapy for the chronically ill. Friends and family of the chronically ill have the luxury of falling back on a powerful crutch: the promise of management. So long as there is a way to maintain a kind of stasis — a ‘putting off’ of the inevitable — they are reassured.
But for the chronically ill individual, this stasis is itself a burden. We are always imminently aware that our body is, in the most bare, physical sense, a failure. That failure does not make us intrinsically less valuable, but there is something to be said about knowing that your body would literally eat itself alive if not for modern medical-science.
So, imagine my joy when I came across the following article by Beyond Type 1, an advocacy group for people living with type 1 diabetes:
The article starts off pointing out an often understated reality: that living with diabetes really, really sucks. The author writes:
“There are significant research studies correlating Type 1 diabetes to depression, claiming that T1Ds are nearly 50% more likely to be diagnosed with a form of depression than non-diabetics (Beyond Type 1). However in a recent UK study, this claim has been further examined and scientists are now suggesting that there is a distinction between emotional distress from managing chronic illness and an actual mental disorder. This emotional distress is known as “diabetes distress” (DD).”
To learn that researchers have started making the distinction between clinical depression and diabetes-related depression filled me with hope. In my experience, clinicians’ tendency to conflate mental illness with clusters of behavior that look like mental illness, but are in fact rooted in tremendous and chronic, life-altering stressors, has been hugely problematic for non-compliant T1 patients struggling with their condition. Rather than helping, these conflations can often prolong and worsen non-compliance, and raise the risk of both short and long-term complications.
Whenever someone in the medical and scholarly community acknowledges these important nuances, I believe we are on the right track to understanding the complexities of living with T1 diabetes. It’s especially helpful when this information is conveyed through popular mediums, such as this post from Beyond Type 1.
However, the article referencing these studies took a rapid nose-dive hereafter:
“Have you ever heard that you create your own reality? The mind is at the root of understanding and managing the stress response. Often it is the reaction to the stress that is more detrimental than the stressors themselves, especially if self-created.”
So, we went from acknowledging the tremendous impact chronic illness can have on one’s mental health, to redirecting blame for that impact on the individual’s psychological resilience.
I’d like to point out here that reactions to stressors are not ‘self-created’. This is an abhorrently over-simplistic understanding of how people respond to stimuli. What determines our reaction to something is a complex interaction of chemicals, rationalizations, and emotions that are tethered to our inborn temperaments and the sum total of our life’s experiences. We in no way ‘self-create’ our response to anything.
Does this mean we have license to disavow responsibility for our responses? Of course not. We are perhaps unfairly burdened with the task of dealing with the issues brought about by chronic illness, but knowing this is very different from advocating for some watered down bastardization of Buddhist philosophy that tries to convince people that they somehow willfully create their own reality. It would be far more accurate to say that the mind creates our reality, and we are hardly ever in full control of the mind’s processes.
The author continues:
“It’s like if you go to a restaurant and have a bad experience; it would probably take many more positive experiences at that same restaurant to get over the one bad experience. This is what it is like living with chronic illness except you can’t pick a better restaurant to go to. This is what is for dinner. So what are the options? You can choose to live with anger, resentment and reactivity or you can choose to do something about it.”
I find this analogy quite trivializing. Diabetes isn’t like going to a restaurant; you can always choose to leave a restaurant. Describing the illness in these terms makes struggling diabetics seem as though they are spoiled, weak-willed brats.
If we’re going to use the food industry analogy here, I’d argue a far more pertinent metaphor would be owning a restaurant and working every single position while you’re at it: you’re the server, the chef, the manager, and the hostess. And every six months, you have a health inspector evaluate how well you’re running this restaurant, and warn you about the potential consequences of not working hard enough to keep the kitchen immaculate, the food delicious, the service better than a five-star hotel, and the management nothing short of inspiring.
Now, I do agree that it’s unhealthy to live with anger, resentment, and reactivity. I agree that if these are the emotions we experience in response to our illness, it’s something that needs to be addressed. But shaming those emotions, characterizing them as something fundamentally undesirable, and more insidiously, as something we choose is unhelpful and damaging.
Anger, resentment, and reactivity are not normal responses to a bad experience at a restaurant. They are, however, perfectly normal and legitimate responses to a life-long illness that could kill you.
The author then goes on to advocate for the use of yoga therapy to balance the body and mind. I strongly believe that any physical activity — whether yoga, meditation, sports, weightlifting, or walking — can be a wonderful gateway to a healthier emotional life. However, the process through which this occurs is highly individualized and deeply personal. What I contend in the author’s understanding of this process is this:
“You cannot control every detail of Type 1 diabetes but your breath is something that you can control.”
Substituting something you can’t control with something you can control doesn’t help or fix the thing you can’t control. Yes, it’s good to be reminded of what we can control to help balance perspective, but this mentality doesn’t address the fundamental cause of the distress.
They go on about their approach a little bit further down:
“This example [yoga therapy] can be applied to so many instances of life with Type 1 diabetes, from staggering health insurance premiums, to uncomfortable insulin pumps, CGMs and needles, to communicating with non-T1Ds, to your own self-forgiveness for not bolusing correctly for your meal.”
I’m all for self-forgiveness, but I won’t lie — the mention of insurance premiums raised my hackles. These are not issues the individual can or should control. These are not individualized problems that we can meditate away. These are hugely systemic issues perpetuated by an abusive and exploitative industry that we should be angry and up in arms about.
In the author’s defense, I don’t think they are trying to suggest that we falsify a sense of control, but that is unfortunately what their rhetoric amounts to. Rather than offering compassion, the author gently tells us to suck it up, to focus on the positives, and to simply not ‘let’ ourselves feel down about something that is actually quite devastating.
I believe this person had good intentions, and I think they were trying to share something they found personally empowering. However, with a disease as emotionally tenuous as diabetes, we need to be extremely careful about how we develop our suggestions, and how we express ourselves.
Moreover, we have responsibility to validate that the system is actively working against the chronically ill with soaring insurance premiums, unreasonably high co-pays, and unaffordable medication.
We need to approach diabetes with the understanding that people who live with this illness find themselves crippled by a demand for control that far exceeds anything that would be expected from an able-bodied individual.