Dear Diabetes, Type I

I just want you to know I hate you. I felt the need to express my feelings so you can really understand what I think about you. I have been holding this in for years. Just a few months ago I started dealing with a few breakthroughs in my Life that have been helping me live a better Life everyday. I am a professional procrastinator and the more I put this off, the better the chance I will never end up telling you what really is on my mind.

First of all, let me just reiterate, I passionately hate you. Actually I despise you so much that I have not actually learned a word to explain the frustration and negativity I have toward you.

Everyday I am forced to give you precious time and attention that I much rather be doing something else with. I did not actually want to meet you. I had no plans of ever scheduling an appointment or taking the time to hear your name. You existed in the world around me but I chose to avoid you like the plague. And yet everyday you continue to stab me with needles like I forgot you were there. You put a whole new meaning to, “you are just going to feel a little pinch.”

You have convinced the world about being this hereditary culture curse that you just get because someone in your family gets. That is a flat out lie. Unfortunately you have educated the world so much that most people can’t and choose not to see health any other way because, “it runs in the family”.

Fortunately for me, I went to school and I paid attention. Fortunately for me, I do my own research on you punk. Fortunately for me, I am headstrong and know if you gave me type 2 I would have won that battle way too quickly.

Unfortunately for me, I have not yet figured out the key to unlock this autoimmune disease that you have infected my body with. Unfortunately for me, tackling type 1 isn’t as enjoyable.

Without controlling almost every aspect of my life, it is extremely difficult to control your moods on any given day. Some days you ain’t nothin’ but a peanut, other days I can’t budge you with a shotgun. Some days you have me forgetting you’re even there, other days you’re all I think about.

Mr. D, you really know how to mess up some of life’s greatest moments..

Remember that time at the gym when I was really in the groove and you just decided to drop my sugar extremely fast and extremely low? Or what about those nights where you ruin my peaceful, restful, and much needed sleep in a frantic panic of sweat? Remember those nights where you held me in a near-coma and if it is not for my wife I wonder if I would ever wake up again? Remember that Sports Chiropractic exam, which was very important to me, and you interrupted my ability to think two hours into the test? Or what about those times when I am in the middle of patient hours and suddenly turn pale and weak? Remember when I first left the hospital and mom had to pull over so I can almost unconsciously puke in the snow? Or what about New Years a few years back when my wife had to force feed me Nature Valley bars because I was unresponsive?

Honestly, Mr. D, I do not think I can ever forgive you for what you have done to me. You make me feel vulnerable, you make me feel weak, you know just how to make me lose all my drive and desire to stand upright. If I could see you face to face the burning ball in my gut would probably make me curl and vomit at just the thought of how I feel about you.

• You have broken my mother’s heart, you have frantically instilled fear in my wife, and you have tarnished the perception of every human being who meets me for the first time or sees the pump on my hip.
• For seven years you held me mentally, physically, and spiritually hostage. You have held me back from living the Life I always wanted, you have held me back from thinking who I can be if I believed, you have emotionally broken me down from a man to a chump on countless occasions.
• Every time I feel like I won something, you remind me I actually lost. When I dream of the future old me, you remind me of the complications you bring with you for the ride.

I am writing this letter to let you know that I have stayed quiet about you for a long time because I am embarrassed. How can I look in shape, be somewhat physically strong, appear like I got it going on, and at the same time be slowly dying on the inside? I wanted friends to not know, I wanted family to not know, I wanted no one to view me as the ‘sick’ one. I hate every time someone else tells me, “oh you can’t eat that.” EFF YOU!

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Some people can take advantage of me for a short period of time. But eventually enough is enough and I will put my foot down. Mr. D, I am no longer scared of you. You do not stop me from anything. You will not stop me from fulfilling my dream and reaching my destiny. You are not even a worry to me anymore. I actually forgive you for being such a piece of shit to millions of people all around me. I think you are quite sly in how you manipulate minds, medicine, and absolutely terrorize this beautiful experience we call Life.

You hold nothing against me, I am letting you go because you no longer mean anything to me.
I forgive you for destroying my father’s life. I forgive you for the hurt I have seen in his eyes going through all these scary moments. I forgive you for the fear you have put on my entire family’s mind.

When I take a step back, you are actually not a peanut, you are smaller than that. When I step back and really look at who you are, I freeze, I blank out. I actually lose my breath because it hits me. It doesn’t hit me, it knocks me off my feet. It stuns me to a motionless and speechless blur where the last 10 years flashes before me and I can’t help but say, thank you…

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Thank you for making me unstoppable.
Thank you for making me strong.
Thank you for making me tougher.
Thank you for making me smarter.
Thank you for pushing me to become a doctor.
Thank you for changing my life for the better.
Thank you for teaching me what health is and why it is important.
Thank you for keeping me on top of taking care of myself.
Thank you for the Life lessons you have instilled on your journey.
Thank you for the people you have brought in my life.
Thank you for secretly being one of the best things that’s happened to me.
Thank you for pushing me to be a better person everyday.
Thank you for opening my eyes to the world around me.
Thank you for letting me use you as a platform to change the world.
Thank you for helping me relate to millions of people.
Thank you for leading me to competitive strength sports.
Thank you for putting this drive in me to Inspire to Motivate.
Thank you for making me dream.
Thank you for pushing me to chase MY dream.
Thank you for changing my complete perspective.
Thank you for putting a meaning to live.

​Male, Age 30
Diabetes, Type I

Dear Diabetes 1

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 am classified as a letter F in the game of life insurance (lower than a smoker and countless other conditions that would really irk me if I knew about).
• As I realized my now-husband was the love of my life, I began asking important questions regarding the genetics he carried (because of you); making sure his family list was free from gland issues and endocrine system failures –  although I am not 100% certain that you, T1 diabetes, is passed along completely through the genetic code. Studies have found you to be linked to a few strains of gut bacteria, in which vaccinations may hold they key for prevention, although these studies still have several years of testing left. I am still convinced I will live to see the end of you and I pray everyday for God to surround my kids in armor against your wrath. I also believe that my genes are pretty rockin’ outside of the potential they may carry you in them.
• I choose to prioritize working out on a regular basis and I thank you for that! There is NO lying that you are more controlled when I workout!
• I get mean looks when I have to eat the last snack in my purse and my kids are staring at me like starving children because my sugar is low.  They are starting to understand that you, diabetes, are a beast not to be reckoned with, it’s just the stares I get from those judge glancers.
• I am stronger willed than most and I must thank you for me having in-depth knowledge on how my body breaks down certain carbs, sugars and fats!
• I have been forever humbled as I still have to ask for help, at times.
• My blood boils when I have to call insurance companies, go to a new Dr. appointment for anything (dentist, eye Dr., PCP, etc.) as they often like to chime in on my medical condition, but through this I am not afraid to fire a Dr.
• You make me annoyed with my kids when you’re not controlled. I just fired my last endocrinologist for the reason that my kids deserve better.  Lay off diabetes, parenting is hard enough without my you pestering me.
• My low blood sugars affect my affection toward those that I love. Why does a low blood sugar have to affect orgasms???

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

Dear Type I Diabetes

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.

​Pastor
​Male, Age 63
Diabetes, Type I

Dear DM-I (Diabetes Mellitus, Type I)

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