I feel you are a piece of my fingerprint, as I can’t recall life without you. You add an extra weight to my shoulders which is where my stress rides. As soon as I have you figured out, you change. I thank God each day for those whom understand this dark, hidden and shaded part of you. So often I feel judged, looked down upon and less because of you. I have to explain to those in healthcare that 100% perfection is unrealistic and I regularly feel judged by nurses and doctors if I open up this conversation at work and in their respective specialities, as their patient.
You allow me to set limits and use you as an excuse. You were so inconspicuous, I didn’t even realize I was under your wrath! For years, I thought I wasn’t smart enough and that I would be a dis-service in healthcare, but slowly I have realized you were wrong. My soul is fueled through the service of others and I refuse to treat someone with disrespect, prejudgement and assumptions. Diabetes, thank you for sparking this fire - you are the driving force that will make me good at this chosen career path! I have fallen victim to you in sports, with relationships and as a parent. You even lowered my blood sugar so drastically that I couldn’t walk this past year. Remember that time in college that I came-to in the ED with a Dr. chewing me out really close to my face, accusing me of drinking too much the night before. I grabbed him by the shirt and asked if he smelled anything resembling boos oozing out of my pores. Case in point Diabetes. I’m glad I have God on my side, coupled with a few Angels, human watchdogs, a bad-ass husband and a few chosen ones who have been or are blessings when I was down with you diabetes!
You cost me a fortune every year and you make me resist change in my life because I fear how much it will cost me. Can I afford the copays? Wait, can I afford the insurance to have the copays during these times? I have been misquoted, misdiagnosed as a Type 2 Diabetic (twice) and talked down to by uninformed customer service reps. Speaking of costs, my favorite Endocrinologist is a Tier 2 provider (which costs me more money) but after firing 3 Tier 1 Endo’s, it’s worth the extra money to have the team who specialize in reigning you back in. Sometimes even you get me so distraught, I need to trust those on my defensive team against you. You are the reason:
I’ve started a list of things I will do when I see this disease cured. An Ironman is the only feat on that list, one that I do not feel diabetes would allow me to do in my current state. Maybe I will change my way of thinking someday or maybe I will rein-in on my dream.
Diabetes, I’ll talk with you in an hour when I’m ready for lunch.
Female, Age 34
Diabetes, Type I
I am writing as the mother of a child with multiple diagnoses. I am 55 and he is now 25 and has coped with migraines, mild bipolar, and IBS since age 5. This is what I say to you...
You will not block his chances, you will not stop us from seeking every avenue at our disposal, you will not make us handicap, you will not stop the dreams he has for himself, because we will find a way to work around you and through you. A therapist once told him when he was just a small boy, "Now, go out into the world and use your special powers for good." She was right! He is now a functioning adult.
Mother, Age 55; Son, Age 25
Migraines, IBS, Bipolar Disorder
You have been my adversary and advocate for nearly 54 years. Since the age of 9 you have guided, for better or worse, throughout my entire life. For many of the early pre-teen and teenage years I hated you! I missed out on so much - parties, summer camp (no camps for diabetics then), overnights at friends' houses, trick or treating, and (of course) all the best foods. You were at best an adversary and at worst an enemy - don't get me started on the trips to the hospital. They were the worst! Especially the first one, when after a single day on the pediatric floor the doctor assigned to me dragged me out of bed to take me down the hall and into a room with a patient my age. "What's wrong with him?" that ass-hole bellowed. "I don't know," I told him. "I think he's just sleeping?" "Sleeping! He's not sleeping. He's in a coma. He's a diabetic like you. He doesn't take care of himself. He comes in every couple of months in that condition. He'll die soon and so will you, if you don't take better care of yourself!" Lesson learned. You're going to kill me. "And if I'm really lucky," another voice told me about the same time, "It won't happen until you're 35."
So, I began a 26 year wait for death - sometimes trying hard to ward you off by caring for myself compulsively and other times figuring, what's the use? I might as well ignore you and enjoy the years I have left! During those times I neglected your care - no urine glucose tests, no finger sticks, no regular visits to the doctor. Whatever happens, happens. Except things happened, which involved more than you and me: Marriage, three children, & (eventually) two grandchildren. Work in the church too, which most days I love - most days. It was here you began to be more of an advocate than an adversary - the second never completely eliminating the first, of course. You advocated for the extension of my life with and for those I love. You nurtured a sense of compassion in me toward those who also live with some chronic or life-threatening diagnosis. Diabetes, sure, but also heart disease, cancer, M.S., M.D., A.L.S., addictions, and all those mental illnesses diagnosed in my family. You helped me sit with them in their diseases and, as you know, into their deaths... Could I have done this without you? Who knows? But I'll give you credit for this one!
Thanks to a stroke and visual problems - which you caused, by the way - I guess I need to give you some indirect credit for pushing me to take my self-care more seriously over the years. An insulin pump, a great endocrinologist, a vision-saving eye doctor, better diet and consistent exercise - don't take all the credit for this last one; the dog encourages daily walks! These habits have lead to reasonably good health, especially for someone who has lived with you for 54 years. An advocate in some ways...
Would I have chosen those 54 years without you? Absolutely! But do I understand the way you have been a major player in forming who I am? I guess another absolutely is in order. Don't get a swelled head - or pancreas, though (ha!) - depending on what happens, I may hate you again tomorrow. Today? Well, we're on pretty good terms, and I guess that's not so bad.
Male, Age 63
Diabetes, Type I Pastor
Many would say today that if you had to have a birth defect, you would be their choice; as the treatment is without side effects. These days, you require only a pill, such as Levothyroxine, Synthroid, or Armor thyroid, to supplement the thyroid hormone. In pill form, the hormone is simply delivered without a need to suffer the conditions and outcomes that I experienced in early development - without a test to determine the need for treatment. In America, today, most children are checked at birth for this condition and treatment is started immediately if found. Previously, though, those affected were considered ‘mentally retarded’ and did not live very long without a supplement.
At birth the signs of your presence had been masked as my mother supplied me with her thyroid hormone en utero. It was after my birth and at home that the telltale signs appeared. This period prior to treatment created concerns for the doctors and problems for me as there were no long-term study results from which they could provide reliable estimates of outcomes - the thyroid medication had only been in use for approximately 18 months prior to my birth. Without this information, I was diagnosed in childhood but it was difficult for the doctors to tell my parents what they might expect in regards to my potential physical and mental development. From conversations I had with my parents as an adult, I learned that the doctors had delivered low expectations for what I might be able to accomplish on an intellectual level. With inaccurate information, my parents did not expect much from me and my sense of self- worth was respectively low.
I have read over a considerable amount of information on you, CH, and understand that the problems that present themselves as a result of having you vary depending on the amount of time that the condition goes untreated. As a result of delayed treatment and your presence in my life, I developed Atrial Fibrillation and Attention Deficit Disorder (AD/HD), along with Clinical Depression. Fortunately, I do have above average intelligence, which allowed me to obtain a college degree and pursue work in my field of study. Unfortunately, the ADD caused all sorts of problems with my employers over the years and at home.
Furthermore, the numerous blood draws that began in infancy led to a lifetime aversion toward needles. On the positive side, this kept me far away from IV drug use, which became popular in my youth and early adulthood. I have not struggled with drug addiction, as I resented so much having to take a medication every day. Unfortunately, the mean kids in school found out and would tease me saying things like, “Have you taken your pill today?” Furthermore, on the negative side - it made it very difficult to watch, much less assist, my daughter with insulin injections when she was diagnosed with Juvenile Diabetes just after her 14th birthday. I still have a hard time watching needles going into bodies now, even if it’s just a movie.
I am now 66 years old. I am grateful at this stage of my life to be in fairly good health. My support system which includes a loving and knowledgeable partner, loving children, grandchildren, close friends, and informed medical specialists help to keep me in good spirits, most of the time. I realize that I am one of the oldest CH people alive today and feel fortunate to have been provided with the life-saving medication at the near beginning of my life. Yes, it would have been nice if the doctors who were caring for me in my infancy and childhood could have given my parents a more positive prognosis; but it is understandable why they didn’t. Nevertheless, my life has been more full than empty. CH, you have been a pain in the ass to live with, but I suspect that you partnered with me to help teach me many of life’s lessons and for those reasons; I choose to accept your presence. Next life, however, I’d appreciate it if you’d go couple with someone else.
Male, Age 66
Congenital Hypothyroidism, Atrial Fibrillation, AD/HD, Clinical Depression
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!”