When Enough is Actually Enough
How perfectionism shows up in how I manage my T1D (Part 2)
Sensitive content warning: This post will contain discussion of depression and mental health, death and grief, and suicidal ideation.
December 27 will mark the 21st anniversary of my diagnosis. 21 years is almost long enough to forget what life was like before my diagnosis. Almost. But not quite long enough, which has really been the crux of the matter for me. The root of my resentment stems from the memory of before. The memory of not being burdened. The time before perfectionism took root in my mind. It’s hard not to long for that time, though I’ve made my peace with it at this point. But let’s be clear: this is not a woe-is-me moment; it’s simply a transparent one. This post will be full of transparency, as I continue to describe what it’s been like to live with Type 1 Diabetes (T1D) and what I’ve learned because of it.
In Part 1 I mentioned how diabetes is considered to be a pretty serious condition with significant risk factors. I actually only recently learned that it also falls under the ADA definition of disability, as does my ADHD, bipolar disorder, and anxiety. It’s been a bit jarring to come to that realization. I’ve heard people talk about invisible illness before, but I never thought about what that meant for me. That it includes me. Perhaps that was partially due to a bit of internalized ableism. Because of the impossible standards I’ve held myself to due to my internalized perfectionism, I couldn’t accept the idea of claiming the identity of disabled. Talk about cognitive dissonance! But I understand that my brain was just trying to protect me. Some things seem so obvious when you look back with new understanding. Each phase is a necessary part of the process.
I’ve also only recently learned that blood glucose levels affect energy levels, mood, and mental wellness. 1 in 4 people who develop diabetes are diagnosed with depression. Mental health is complex, especially when you’re managing multiple conditions. I don’t know whether or not my depression stems entirely from diabetes, but I imagine it’s likely more complex than that. Still, I do know, as I stated in Part 1, that I experienced a lot of negative emotions around my diagnosis, emotions that I have internalized and carried with me ever since. I don’t know how even to begin to track how blood glucose impacts my mood or feelings, and honestly, I don’t think I want to. I’m already trying to keep track of so much. Sometimes it feels like it’s too much. I am learning that most things in life are not all-or-nothing. But sometimes it’s hard to ignore the pressure of all-or-nothing that perfectionism constantly demands.
Sometimes I don’t think people believe me when I say I’m doing the best I can. There’s this concept called the Spoon Theory, coined by the writer Christine Miserandino, which describes what it’s like to manage energy and capacity when dealing with mental illness/chronic illness/disability. A spoon represents a finite amount of energy. People who don’t deal with mental health or chronic conditions have an infinite number of spoons each day. Those spoons allow them to complete everyday tasks and fulfill their responsibilities. People who do deal with chronic and mental illness have a limited number of spoons each day. Basic tasks like showering or making meals use up those spoons quickly. Spoon capacity and depletion vary from person to person, day to day. I often feel like I don’t have enough spoons to get through everything I need to in a day. Can you imagine what it’s like to have a limited number of spoons at a dinner serving soup to a large group? It doesn’t work.
I now know that part of what I’m experiencing is because of diabetes burnout. Diabetes burnout is the result of diabetes distress.
According to the research and advocacy organization Breakthrough T1D,
“Diabetes distress is defined as a range of emotions specific to living with diabetes. This includes feeling overwhelmed by the burden of managing diabetes, fear of complications, dealing with complications, fear of hypoglycemia, feeling defeated with your A1c or time-in-range, the stress of wearing diabetes technology, anxiety over the cost of diabetes and health insurance struggles, and the impact of diabetes on your other day-to-day responsibilities.”
“Feeling overwhelmed by the burden of managing diabetes,” is something I have experienced for as long as I can remember; I just didn’t know there was a term to describe it. I am very grateful for the amount of research and discovery that has occurred around T1D management over the years. Justice work has taught me that you cannot deal with a thing if you cannot name it. It’s also helpful to know that I’m not the only one, that my struggle is not unique, though my circumstances are.
In some of my lowest of low moments, there have been times when I wondered if it was even worth it to keep trying so hard to manage this disease that will likely claim my life at some point anyway. Afterall, one of my grandmothers died due to complications from T1D, and so did my older brother. I’ve been even more fearful of an early death since my coma. These fears are not irrational. According to the CDC, diabetes was the 8th leading cause of death in the United States in 2021. Studies have shown that the life expectancy of those diagnosed with T1D is reduced by 10-12 years on average. Though I’m in a good place now, these statistics are sobering.
In 2018, I participated in a panel discussion featuring a doctor who shared educational information about the disease and two other women who shared their experiences. One of the women shared that she’d had a heart attack at age 33. Thankfully, she had survived and was doing much better at the time of the event. We exchanged phone numbers, but didn’t end up keeping in touch. Sadly, I saw on social media that she passed away a few years later. I believe she was still in her 30s, or maybe early 40s by then. My brother was only 34 when he passed. I’m 32 now. It’s actually one of my deepest fears that I will die young. Sometimes I feel like I’m running out of time. There is so much I hope to do and experience in this life. Again, I’m not sharing this to be pessimistic or to ask for pity (please don’t!). I’m sharing this for transparency. This is the very real reality that I have no choice but to be conscious of. Aren’t we all to some degree?
However, I try not to live in that fearful, anxious space, and I succeed many days. I have learned that it’s okay to let go of what is outside my control. I know no one can predict when their time will come, medical conditions or not. I know I have no control over it. My experiences with grief and loss over the years have only reinforced that understanding, and I try to honor it by living my life as fully as possible. I try not to take time for granted, especially when it comes to spending it with loved ones. I truly believe it is a miracle to wake up each day, and a blessing to be in a body that functions as it should for the most part. Even with the restrictions I have, I recognize it could always be worse. I am grateful. Still, multiple things can be true at the same time.
My incident on the plane reminded me that I do actually want to be here. I want to live, and live well. I want to thrive. I want my life to have purpose; a positive impact on the world. I want to create and teach and share and heal and do all the things humans were designed to do. This outlook didn’t come easy. There was a time not that long ago when I didn’t feel this way. There was a time when I just wanted everything to stop. I didn’t want to have to exist anymore. I was tired of all the pain, all the effort required to be a human. I was tired of trying so hard without ever feeling like it was getting easier, and like the world was only getting worse. Fortunately, I sought help before it got to a point where I was thinking about harming myself. But it was bad enough that I sometimes wished something would happen to make it all end. On my lowest of low days, sometimes this feeling creeps back in. But with support and tools, I’ve learned to manage it well. If you ever feel this way, I encourage you to talk to someone about it, too.
It is extremely frustrating when I feel like I try to be strategic and plan ahead with my diabetes management, but things still don’t go the way I hope. I’m sure anyone with a chronic illness can relate. And that’s the thing about invisible illness – it’s all what is experienced inside the body. Most people can’t tell how you feel based on how you look. Perfectionism (and its antecedent: capitalism) requires you to push through, no matter how you feel. Even though I have supportive people around me, it’s still hard when you feel like no one truly understands what you’re going through. And I know the people around me have good intentions, but sometimes they don’t have the language to match. Family, friends, and doctors alike have all said something that inadvertently reinforced the negative voice inside my head that says I’m not doing enough. The voice that reminds me that they don’t understand and I’m alone in my struggle. The voice that tells me I shouldn’t trust how I feel in my body.
I have been working really hard to silence that voice by letting go of my limiting and maladaptive beliefs, but it is really because of these blog posts that I’ve started to think about my beliefs about diabetes. In my daily life, I am constantly reminded that the healing process requires intention, presence, and reflection. And each and every day is an opportunity. This is the light that guides me through the darkness. On the really hard days, I’m learning not to shame myself for existing in a human body that sometimes needs a day to do nothing but rest. On the days I don’t meet my productivity goals, I remember what I did get done. My therapist reminds me that life is not about productivity or targets. I quit my job so I could focus on resetting my nervous system. That requires periods of rest, too. Showing up authentically requires honoring your needs. Showing up authentically is enough.
Releasing myself from perfectionism is a daily practice. But perhaps one of the most unexpected benefits of doing so is that it has expanded my capacity for understanding and giving grace to others just as much as it has expanded that capacity for myself. In this time where it seems like hyper-individuality is leading to the collapse of community and, by extension, society, it may seem counterintuitive to prioritize your own healing above being in service to others. But I believe the best way to show up for others is to show up for yourself first. Perfection does not truly exist. The sooner we internalize that, the sooner we give ourselves permission to just be. To exist as we are. We give ourselves permission to try again when we don’t get it right the first time. We give ourselves space to show up authentically, human. We demonstrate for others that they can do it too. We demonstrate that enough is enough.
Love and light always,
Domi
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