What a perfect time to write you: Sitting alone drenched in sweat, popcorn crumbs in my lap and a stomachache coming-on from slamming sugar. As usual, you interrupted me in the middle of something meaningful. You took my relatively clear mind and grounded state out from underneath me. I was so engaged in what I was doing that I didn’t even feel you creeping in but then, WHAM – there you were: Shaky hands, blurring vision, sweating body, fogging mind, and complete loss of energy… Of course I had glucose tablets with me, but you know how much I hate them – Airheads too, at this point. Of course I knew how to find help to transport me back to my room, where I could wait out the worst of it in the air-conditioning. I always have to have a safety plan in place when I’m with you (which is, unfortunately, always).
Thanks to you I have to have all sorts of things with me at all times: Blood glucose testing meter, strips, wipes & batteries; snacks & water; an extra inset or 2 for my pump; and an unexpired emergency Glucagon. If we travel far from home – or anticipate being in a position whereby we can’t make a quick, easy return trip – I better make sure that there’s enough insulin in the cannula; or make sure to bring that too, which means an ice pack… I love to travel but when we do, I have to both consider – and carry – much, much more. Your durable medical equipment is costly and mitigated by third party medical supply companies, which means I’ve got to calculate risk, navigate pharmacy & insurance restrictions & requirements; and ensure that I’ve got a reliable mailing address in place. God forbid the postal service fails to deliver your supplies on-time, requires a signature for delivery or the goods go missing… And if we use supplies more frequently than insurance deems necessary, be prepared for yet another timely pursuit to obtain a letter of ‘medical necessity’ – as though you might one day up and leave me without a public health announcement. YOU ARE SO HIGH MAINTENANCE!
I will admit that in the beginning I did not have the animosity that I feel toward you now. Less than a year before you came into my life, my folks told me that I might have something called Turner’s Syndrome – marked as plausible in infancy because of my “webbed neck” (a part of my body that I’m still uncomfortable with and might not have ever seen as ‘abnormal’, otherwise). The condition would mean that I was infertile, so at 13 years old I grieved the loss of ever being able to have children of my own; which strangely prepared me for your arrival.
I did get my period a couple months later, though (HOORAY – no Turner’s) but then came the yeast infections. One after the next. My body grew tall, as I became thinner and thinner. The day before diagnosis, my homeroom teacher slid informational brochures about anorexia & bulimia onto my desk – for everyone to see. I was mortified and angry, then & still: You had begun to hinder my body and the ways in which the world would see me before I even knew your name…
Mom built a practice extending loving support to children with ‘special needs’, which may have further softened the blow; as I got plenty of special attention from her and others when you first arrived. Because my brother was already acting out at home – causing visible strain on my parent’s relationship – and because I liked being seen as a strong, independent teenager: That 1st week or 2 wasn’t all that bad. I wasn’t terribly afraid of needles and caught-on quick to the mathematical demands you would forever use to control me. I ‘passed’ the diabetes test, so-to-say, which is when the world seemed to take a step back – leaving me all alone with you.
What I didn’t understand then was just how slippery a snake you were – that no matter how hard I tried to control you (tame you, even) – you would forever prove yourself to be WILD; influenced by things radically beyond my control. I am so angry that your name is as popular as it is. You are nothing like Diabetes, Type II – definitely different from Gestational. Yet, thanks to public health initiatives and drug company advertisements, your name has become entirely familiar and easily misconstrued. Your name is deceitful – hiding in the shadows of processed foods and a sedentary lifestyle; an emerging epidemic associated with obesity and old age! So, while the Western world at large now thinks they know you – when they see me – only I will ever know you (and the tangled web we weave).
Every day you control me with numbers – always just out of my reach. Because I refuse to let you tell me precisely how to live my life, you react to everything that comes your way: The food I choose to eat; the amount of physical movement I put into my day; the hormones operating in my body (associated with stress, my every changing female chemistry and otherwise); the use of coffee, alcohol, cigarettes to cope; even sex is a trigger for you to step in and push me aside!
I can never completely relax with you living inside of me – shifting gears, changing direction; relentlessly messing with my body and mind in response to all things having to be considered by me and me alone. I want to scream when doctors ask me what my numbers are ‘usually’ like – don’t they know that there is absolutely nothing usual about our relationship?!? I hate being judged for blood glucose readings, for my choices in diet and lifestyle. I hate having any medical professional outside of my endocrinologist, comment on what they think they know about what the condition ‘should’ look like; whether or not my A1C is ‘good’ or ‘bad’ – viewing it as an indicator for the quality of my future life. I hate being shamed for my life choices and having to explain myself to strangers at large, which I do both out of necessity and a strange sense of responsibility adopted far too early in my life…
In fact, my life’s work has ultimately revolved around you and your unjust ways: Diabetes camps, degrees in psychology and social work, medical case management, crisis intervention, parent education, social support groups, counseling for children with chronic conditions, yoga & meditation , the mind-body connection, food as medicine… Whether I like it or not, you have shaped my journey – inspired my interests and fueled my passions; but you’ve stifled my pocketbook and spirit, too.
No matter how hard I’ve tried to generate income, your price is steep and largely unpredictable. In recent years, you have cost me annually some $10,000; and the complications associated with a lifetime of chronic illness have only just begun. There’s the cost of medical supplies, doctors visits, treatment, education, support; general medicine, endocrinology, neuropsychology, ophthalmology, gynecology, gastroenterology, podiatry, even dentistry knows you by name! Messing with my immune system, nervous system, reproductive system, G.I. system, cardiovascular system… even my skeletal system requires special attention because of you!
Despite my efforts at ensuring appropriate intervention, if not prevention; alongside an A1C of 7.4 maintained without the use of a continuous glucose monitor for 5 years standing – my medical chart reads ‘Diabetes Mellitus, Uncontrolled’. Always has, always will – despite the unrealistic standards shoved down my throat by medical professionals at large! Do you realize what sort of an effect unattainable expectations and moralistic judgments have on a person such as myself?! I’m a perfectionist, for God’s sake; an enneagram type 1… Is there really such a thing as being ‘in control’ of type I diabetes; or is this just another way of setting me up to fail??
You influence my mood day-to-day, my ability to pay attention and (consequently) the relationships with people that I care about. You make me irritable for no good reason – angry when you insist on a blood glucose roller coaster ride: Up, down, up, down; high, low, high, low. You have interfered with genuine intentions to connect intimately with others more times that I can count. You’ve kept me from reaching states of relaxation, feeling sensual pleasure, and allowing for trust. You have caused my body to betray me over and over and over, again. Even when I make time for physical fitness – for investments in our future together – you’ve turned things upside down! You have genuinely interfered with my ability to care for myself, my relationships, my future (even) with loving compassion; kindness and consideration. You have inevitably become the relentless voice of my inner critic, and I hate you for it.
LEAVE ME ALONE!!! I want you out of my life! You are a monkey on my back, a leach on my thigh – making noise when I need you to be quiet, taking resources even when I haven’t much to give. You’re an abusive spouse, whose wrath I’m asked to live with; a teenage pregnancy with too many complications and developmental delays. You have taken so many things from me and, yet, you never stop asking for more in return!
I am unlikely to be a mom because of you: You beat up my body and take-up far too much of my time and energy – every single day. I know what ‘diabetic fetopathy’ is, after working at the craniofacial clinic; and Steel Magnolia’s was one of my reference points in 1996 when I was first diagnosed.
I’ve felt bound to an unfulfilling partnership for years – largely – because of you: I can’t imagine ever finding someone as patient, understanding and inclined to be my caregiver as he has been; which makes it far to frightening to leave. After all, to partner with me is to partner with you (because we come as an inseparable pair).
I have burned myself out – in part – because of you: Stepping into the role of advocate and coach was the only way I knew how to keep moving forward. Anger over injustice fueled my plight for years – it fuels much of my ability to manage your incessant demands, now. Over time, helping others help themselves became my plight: After all, I’ve felt little control in the confines of our relationship, so why not help others harness control where I have seemingly lost it??
Wearing masks, playing games, ceaselessly working toward something ‘better’ has become the norm; but at a price. Ignoring the signs, minimizing the risks, failing to practice what I preach has turned me into my own worst enemy; an imposter to say the least… I have become a person that I mistreat, misuse, and grossly misunderstand.
Ultimately, I’ve checked myself into a residential treatment facility because of you: Your weight has become too much to bare and the thought that I might easily overdose on insulin to check-out on this lonely, relentless fight – too persistent to ignore.
I want better. I deserve better! But for now, my body has kept the score, and my mind needs time to unload.
Female, Age 35
Diabetes, Type I; Hypothyroidism (Hashimoto’s), AD/HD, Clinical Depression with Generalized Anxiety