What a perfect time to write you: Sitting alone drenched in sweat, popcorn crumbs in my lap & a stomachache coming-on from slamming sugar. As usual, you interrupted me in the middle of something meaningful. You took my relatively clear mind & 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, & 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 around when I’m with you (which is 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; & 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). Whenever we venture away for extended periods of time, I have to carry much more – you require an incredible amount of medical supplies, which means calculating risk, pharmacy & insurance at minimum. Pump supplies aren’t easily accessed, so there’s negotiation with mail order pharmacies, too. God forbid we use supplies more frequently than insurance deems necessary, as that requires a letter of ‘Medical Necessity’ every damn time. 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 may have something called Turner’s Syndrome – marked as plausible at birth because of my ‘webbed neck’ (a part of my body that I’m still uncomfortable with & might not have ever seen as ‘abnormal’, otherwise). The condition meant 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 (HOORAY – no Turner’s) but then came the yeast infections – one after the next. My body grew tall, as I became thinner & thinner. The day before diagnosis, my homeroom teacher slid informational brochures entitled Anorexia & Bulimia onto my desk - for everyone to see. I was mortified & angry, then & still: You had already begun to influence my body & the ways by which the world would see me, even before I 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 & 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 woman: That 1st week or 2 wasn’t all that bad. I wasn’t terribly afraid of needles & 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 wild. 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 & drug company advertisements, your name has become entirely familiar. You are deceitful – hiding in the shadows of processed foods & a sedentary lifestyle. You are an emerging epidemic associated with obesity & old age. So, while the Western world at large now thinks they know you, only I will ever know you (& 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 & otherwise); coffee, alcohol; cigarettes; even sex is a trigger for you to step in & push me aside!
I can never completely relax with you living inside of me – shifting gears, changing direction; always moving my body & mind in response to all things having to be considered by me & 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 choice in diet & 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 & having to explain myself to strangers at large, which I do both out of necessity & a strange sense of duty adopted far too early in my life. In fact, my life has ultimately become all about you & your unjust ways – diabetes camps, psychology, social work & medical advocacy, crisis interventions, yoga & wellness, the mind-body connection, parent education, social support groups, counseling for children with chronic conditions…
No matter how hard I try to make money, you will always weigh me down. It costs me $10,000 a year on average – at this point in my life (35 y/o) – and the complications from life with ‘Diabetes Mellitus, Uncontrolled’ (as written on my medical chart) have only just begun. There’s the cost of medical supplies, doctors visits, treatment, education, support. General medicine, endocrinology, ophthalmology, neuropsychology, gynecology, gastroenterology, podiatry, DENTAL! Messing with my immune system, nervous system, G.I. system, hormonal systems… skeletal system?? If not intervention, prevention – expectations & judgments voiced since adolescence. All of this & I assure you: I am much better ‘controlled’ than a majority of my peers with an A1C of 7.4 for 5 years standing – is there really such a thing as being ‘in control’ of type I or is this just another way of degrading me?!?
You influence my mood day-to-day, my ability to pay attention & (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 have kept me from reaching states of relaxation, feeling sensual pleasure, and allowing for trust. You have caused my body to betray me over & over & over, again. Even when I make time for physical fitness – for investments in our future together – you have turned things upside down. You have genuinely interfered with my ability to care for myself with loving compassion – you are the relentless voice of my inner critic!
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 are an abusive spouse, whose wrath I’m asked to live with – a teenage pregnancy with too many complications & developmental delays. You have taken so many things from me – asking even more from me in return.
I am unlikely to be a mom because of you: You beat up my body & take up far too much of my time & energy - every single day. (Not to mention that I’ve seen firsthand cases of ‘diabetic fetopathy’ while working at the craniofacial clinic and – as a social worker - know the odds of adopting a child with its own special needs, all too well.)
I’ve felt bound to an unfulfilling partnership for years – largely – because of you: I can’t imagine ever finding someone as patient, compassionate & inclined to be my caregiver as he has been; & to partner with me is to partner with you - we come as a pair…
I have burned myself out – in part - because of you: Stepping into the role of advocate & 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 has become my plight. I’ve felt little control in the confines of our relationship, which has inadvertently influenced my desire to help others establish a sense of control in their own. Wearing masks, playing games, ceaselessly working toward something ‘better’ has become the norm. Ignoring the signs, disregarding the warnings, failing to practice what I preach – I have become my own worst enemy. I have become a person that I mistreat, misuse & misunderstand.
Ultimately, I have checked myself into a residential treatment facility from which I write – because of you: The option to overdose on insulin & give up this lonely, relentless fight was never as appealing as it was when I chose to admit. Needless to say, my body has kept the score, & my mind can no longer keep up.
Woman, Age 35
Diabetes, Type I; Hypothyroidism (Hashimoto's), AD/HD, Clinical Depression
Brianna Schiavoni, LCSW
“Ms. Schiavoni has given a voice to many people who battle various diagnoses. Through this therapeutic and empowering writing project, participants can finally share their story and reclaim their power over that diagnosis!”