Blog Manager, Author at Dear Diagnosis

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A disassembled Russian tea doll set symbolic of what it is like to manage the 'parts' of Dissociative Identity Disorder (DID) at Dear Diagnosis: a literary project.

Dear Dissociative Identity Disorder (D.I.D.)

March 19, 2018

NOTE (from the Project Director): According to the DSM-5, Dissociative Identity Disorder is when two or more distinct identities or personality states are present, each with its own relatively enduring pattern of perceiving, relating to, and thinking about the environment and self. The disorder develops after severe developmental trauma that interrupts the child’s ability to integrate all parts of self.

You are hard to describe. It’s hard to put into words just how life saving – yet destructive – you really are. Allow me to describe a day with you:

I wake up in the morning to start the day. I get dressed, start the coffee and jump in the shower. I step in, but you do too causing something else entirely to take place. Someone else takes over – someone inside decides to step forward and pilot the body for a few hours. One of my ‘parts’ comes to life, yet I, the host, am completely out of the loop – completely blacked out, like a person whose drank too much and can’t remember anything they did the next day. Accept, not the same at all, because this isn’t chemically induced – it is all me and extremely scary.

During these episodes I act completely unlike my adult self. I switch into one of 3 alters: (1) A timid 5 year old girl; (2) An outgoing and vibrant 8 year old; and, lastly, (3) An angsty 13 year old who thinks she is a full grown adult.

I remember when my therapist first told me about you – ‘Dissociative Identity Disorder’, formerly known as ‘Multiple Personality Disorder’. My entire body initially cringed, because I didn’t want to be the “crazy one”; but then I calmed down and thought about what this diagnosis really meant. It meant that I wasn’t crazy! It meant that I wasn’t blacking out for hours at a time for no reason. It meant that years of lost time and actions that were allegedly performed by me (but felt so foreign to me) came from someplace real!

I am getting to know you, now, and my respective parts, but we’re not exactly friends – frankly we want to kill each other at times (NOT an overstatement). But, I’m learning to respect you and each of the parts that you enact within me – because each part has a story and each story comes from someplace very real in my life. Places that will forever affect me because they took place in early childhood. I wish I were stronger – strong enough to hold onto each piece separately, so as not to slip in and out of your dark holes. I’m grateful, however – grateful that you saved me during times in my life that I needed those parts of myself to survive my past.

My 5 year-old part is small. I see her in the sad eyes of other little girls who clutch onto the arm of their favorite teddy bears. She has short brown curly ringlets that bounce when she walks. She talks, but is hardly heard because she whispers. She is scared, scared she will be seen by men who have hurt her; scared she will talk too loud and be punished; scared she will blink her eyes too long and the people she thought loved her will disappear forever. She has deep brown eyes and big bold pupils that look around at everything. She doesn’t just see the world as it appears, though; she sees what she can sense – fear, happiness, joy, and excitement. She is quiet, but she loves to be noticed. She loves when someone safe wraps their arms around her and holds her tight. She loves when you look at her artwork and adore it. Unfortunately, when I picture her in my mind I see her as exceptionally tiny – a minuscule little girl in the corner of a big dark room. She is curled up with her head bent down. She is wailing, cries echoing through her chest.

My 8 year-old part is the protector. She is who kept me calm and happy in times of extreme panic and sadness during my upbringing. She is one big ball of energy, a classic bouncing pre-adolescent girl. She loves music and dancing and can play the piano better than anyone in our system. She is a pudgy little thing, with a gap in her two front teeth and cheeks big enough to fit in an entire handful. She is adorable, nonetheless. She has a zest for life and loves everyone she meets. She will play with anyone, introduce herself to anyone and put herself out there in, sometimes, not so safe of ways… She has wavy brown hair, not as curly as her 5 y/o counterpart, and brown eyes. She loves to talk and to be talked to. She doesn’t hold as many bad memories as either of the other parts I seek to understand. Unlike both of them, that isn’t her primary purpose. Her purpose is to help me function in everyday life, like in school, work, and social situations – you, DID, have made it clear to me that her primary position is to help me survive in the present…

The oldest part of the bunch knows and claims her age. She is 13 going on 30 (pardon the pun). She has been an integral part of the system for the longest amount of time. She was present for the majority of the trauma that occurred – she is the manufacturer of resentments, anger, and the hard shell that wards off any forms of love, affection, and care from foreign sources. Her primary job is to keep everyone safe – every part of me looks to her for safety… But, in doing so, she has learned to push everyone in the real world away. She isolates, self-harms, over drinks, and acts out sexually in order to fill internal voids that she wont let anyone else help her heal because she is too scared to be vulnerable…

Each of my parts have played vital roles in my survival up until this point. Without them, I don’t know that I would have been able to handle the trauma, pain, and heartache that my past has created for me. Of course there are plenty of things to complain about as a result of your existence, DID; you haven’t been all good. Switching in to a terrified 5-year-old personality in the middle of a job interview (for example) is not ideal. The ways you show up, in fact, have caused me to lose any hope at being hired; any hope in holding down a job when I really needed it most. But, I’m learning every day how to appreciate each of the parts that you keep me in touch with – each of which has helped me get to where I am today. I am learning how to create boundaries with each part of me that remains intact. For example, I now understand the importance of making time for myself – the adult; as well as how to facilitate appropriate playtime for the others – ‘the littles’.

So, DID, thank you for your service. Thank you for being there when I was just a little girl, just a vulnerable tiny little child who had no one to help her. Thank you for giving me my soldiers – all 3 of them – to fight my battles for me when I couldn’t fight for myself. Thank you for quite literally giving me the superpower to survive the unthinkable. But please hear me when I say, I am stronger now. I am safe. I can do this on my own.

Female, Age 23
Dissociative Identity Disorder, Complex-Post Traumatic Stress Disorder, Clinical Depression

A boy stands at the baseball mound ready to swing, while his mother - who suffers from Anxiety - watches from behind a chain-link fence.

Dear Anxiety

February 22, 2018

I don’t care what type of specific diagnosis you want to manifest as: Generalized Anxiety Disorder, Social Anxiety Disorder, Selective Mutism, Panic Disorder, Agoraphobia, and others. You are so creative in the ways you cripple our lives.

Of all the horrible things I have to say to you… I want to tell you I hate you most because you hurt my children. I want to go to sporting events, volunteer with groups at school, plan big birthday parties, and do all those things moms get to do. The joy on their faces warm my heart on the days I make those things happen. It takes everything I have to do it.

The tragedy is that you, Anxiety, hold me hostage and keep me from being who I want to be. You have killed the mom I wanted to be… still want to be. You must relish in the moments I hear my youngest say, “Why isn’t Mommy coming to church again?” And do you contort your beastly face into a demonic smile when you hear, “I wish you could come with us today. It’s not as much fun at the game when you’re not there.” You break their hearts. But they are still too young to understand… so you make it look like I am the one breaking their hearts. They don’t understand it’s not me. I take the blame for you and your evil ways! I HATE YOU!!! You break my baby’s hearts…

Anxiety, you will not win. Just as you have been relentless in my life, I, too, will persist beyond your ability to hold your grasp on my life. It’s MY LIFE. It is not yours. I will continue finding the right balance of medications, holistic approaches, and therapy to finally beat you some day. Then I’ll plan a big party for myself and invite everyone I know! Well… almost everyone. You, Anxiety, will not be invited. You will be burning in Hell where you belong.

Female, Age 37
Clinical Depression, Generalized Anxiety Disorder, PTSD

A man looks out over a body of water, as the sunsets; to complement the tone of a letter written to Cancer and published at www.deardiagnosis.com.

Dear Cancer

February 19, 2018

Welcome my newest teacher – cancer. I was told six years ago that I had six months to live with, yet another, condition. I learned a lot from that experience, and it introduced me to you. I know you are inoperable, but we have a plan for your transportation when it is time to go.

So far you have taught me so much. You have shown me the value of the little things, every moment, and how much I love my family and friends. You teach me something every day. In fact today you taught me the limits of pain when you caused both of my legs and forearms; chest, and neck to all cramp up at one time. You showed me that I was not in control, as I lay there on the floor hoping someone would come scoop me up.

You have taught me that it is more important than ever to work with my clients in recovery from substance abuse and my people that come to me for Shamanism.

When you leave, I will give gratitude for all you have taught me as I gave gratitude to a different diagnosis – cirrhosis – all those years ago because it taught me to be vegan, to be abstinent, and to walk a spiritual path.

So, Diagnosis, you’ve brought me this new teacher, so I will thank you as well. That said, I don’t mind if you stop visiting me so often. The hepatic encephalopathy has been a hoot. Who knew you could end up in the backyard in the middle of the night with your last memory being lying down to bed?! Or that time I was suddenly at a stoplight in the neighboring town with no idea how I got there, and I was driving… Thanks for banding of verifies in my throat, too, which is always a gentle reminder of the cost of partying too hard.

In all, Diagnosis, you have brought me a lot these last six years, and I am a much better man for it.

P.S.: Big time thanks to the Department of Veteran’s Affairs who has taken me under their wing and is covering all of this treatment including the impending transplant. Also, none of this would be possible without my support team and the people around me who are helping me in many ways. I love them all (and the VA too).

Male, Age 51
Diagnoses Unclear at time of Publication

A handful of pills with words written atop each one to convey what it feels like to live with Depression.

Dear Depression

February 12, 2018

You’ve made me an invisible celebrity! How is this possible you ask? Well, people begin to whisper when they see me enter a room. They look at me but are careful to give just the right amount of eye contact to communicate a friendly hello. Then, they watch me with brief looks through quick glances; so as to avoid being caught staring. I’m the most talked about person at family reunions. Thanks to you, people want to know so much about me and gossip. I could probably have my own magazine that they’d just love to read!

Like a celebrity, the average person knows little about me. They know my job, how many kids I have, and, perhaps, where I vacationed recently. But they don’t know the real me. They don’t want to dare cross that social stigma to associate with someone who is “mentally ill” and battling an invisible diagnosis… battling YOU! If I had cancer, they’d send casseroles and understand why I can’t make it to an event. Depression, however, you are riddled with symptoms people don’t understand.

I want to rip my hair out when people give me their well-intended antidotes and cures. I’ve really heard it all at this point. “Just trust Jesus more and you’ll be happy.” “I have an essential oil for that!” “Everyone goes through a tough time at some point and this will pass.” “Lose some weight, eat healthier, and do yoga. A healthy body equals a healthy mind.”

While there is some truth to all of these for people struggling with a tough time in their life, you, Depression, are a different beast. I have tried all of the above, along with: counseling facilitated by a trauma therapist, EMDR, CBT, psychotropic medications, psychiatrist, a 5-week intensive treatment facility, and more! Nothing has “cured” me at this point. It’s still a struggle every single day of my life, thanks to you…

One of my favorite lines from a movie about a woman struggling to manage you comes from a scene where her husband asks her why she chooses to live where she is with a friend (who also has suffered from the agony of your control) and not at her home. Her response was so powerful to me. She simply said, “She doesn’t ask me how I am. She knows.”

My family does not understand and is not supportive. It’s possible I’ll lose my job because I’ve missed so much work for side effects from medications, days when you and anxiety trap me from escaping the security of my bed, or other lovely aspects of your nasty diagnosis. And just like people stop when they hear a celebrity’s name… people stop when they hear the words “mental illness” or “Clinical Depression”. They get afraid and worried by the real you. You are like the plague! When people ask how I am doing it’s just easier to say, “I’m tired.” If I really told them… they couldn’t handle it. And even worse, if I told them, “I’m clinically depressed,” I’d often get a response like, “I’ve been so depressed lately, too! There’s just so much to do and blah, blah, blah.” They’ve never really met you. They don’t know how you ruin lives. How you’ve ruined mine. I hate you Depression!

Female, Age 37
Clinical Depression, Generalized Anxiety Disorder, PTSD, Epilepsy

A finger with a droplet of blood is used to provide a sample for blood glucose testing; which accompanies a letter written to Diabetes-1 for Dear Diagnosis.

Dear Diabetes 1

January 31, 2018

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

A toddler looks at a graphic image with excitement, just as his mother is excited to see that her son's doctors' prognosis was inaccurate.

Dear Diagnoses

January 30, 2018

NOTE (from the Author): 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 & IBS since age 5. This what I have to say to these diagnoses.

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

Artwork depicts a dove landing atop the outstretched hand of an angel; which was used to capture the tone of a letter written to Diabetes for www.deardiagnosis.com.

Dear Type I Diabetes

January 21, 2018

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

A man with facial hair's mouth appears with a single pill sticking out of it to compliment a letter written to Hypothyroidism and Synthroid for the Dear Diagnosis literary project.

Dear Congenital Hypothyroidism (CH)

January 21, 2018

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

A donkey made to carry an unjust load, just as the author of the adjacent letter written to juvenile onset diabetes has been asked to carry much more than anyone ought to be expected. View the letter at www.deardiagnosis.com.

Dear DM-I (Diabetes Mellitus, Type I)

January 20, 2018

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