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Letters written to problems, not people – by everyday champions, like you.
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A 'thank you' letter written by a 16 year-old anonymous author to her chronic condition: ITP

Dear Invisible Illnesses

January 2, 2023

Thank you for teaching me that sometimes people don’t always believe in what they can’t see, even if they pray to God every night and tell their kids Santa Claus is real. Thank you for reassuring me that it’s not all in my head, and I was right all along. Thank you for making me feel proud of myself for how far I’ve come. Thank you for teaching me to enjoy the small moments, and find beauty in everything around me. Thank you for showing me I’m never alone, because I have myself. Thank you for encouraging me to stand up to people, to advocate, and to not be scared to say the truth. To be grateful for what I have, while knowing that it’s also okay to be selfish.

I know sometimes I complain, because – yeah – it sucks. When I started writing this letter, actually, I felt frustrated and exhausted; but then I realized that you taught me things I couldn’t have learned on my own. And I wouldn’t trade that for anything… So, the lasting sentiment is this: I am thankful. Thankful to you for helping me learn that those two things can be true at the same time. Thank you for saving my life.

Sincerely,

A Girl with Invisible Illnesses, Age 16
Idiopathic Thrombocytopenic Purpura (ITP)

A teddybear lays face-down in a bed reflecting the tone of an author's letter written to idopathic hypersomnia

Dear Idiopathic Hypersomnia,

May 5, 2022

Because of you, I have always, and will always, be Forever Tired. I have an insatiable need for sleep. People say “Oh, I’m tired, too.” but they don’t know this kind of tired.

Some people go to brunch, read books, hang with friends, play sports, have hobbies. I sleep. I’ve fallen asleep while driving, while at the circus, in countless waiting rooms, on concrete floors, in the shower. It’s embarrassing to wake up late for a 2pm meeting. It’s shameful to fall asleep in the middle of a conference room full of business executives.

A boss of mine used to say “You’ll sleep when you’re dead.” What a privilege for sleep to be optional. To be able to CHOOSE to be awake. And not just awake, but PRODUCTIVE. To do more than walk around in a sleepy haze, daydreaming about crawling into bed.

The problem is, sleep feels GREAT. It’s my drug. How do I not give into the siren call of sleepiness? Sleeping is my superpower. And my kryptonite.

How much of my life have I spent hitting snooze? I’ve missed so much. I’ve unwillingly devoted entire days to sleep because of you. The sun makes me tired. Rain makes me tired. Eating too much. Not eating enough. Car rides. Bike rides. Swimming. Everything makes me tired. Idiopathic Hypersomnia, YOU make me tired. And no one knows why you exist, how you came to be, how to control you or how to cure you. I don’t even know if I’m calling you by the right name. One doctor says Hypersomnia, the other says Narcolepsy. There’s also Non-24 Hour Sleep-Wake Syndrome and Delayed Sleep Phase Syndrome to choose from.

I’m so tired of talking about being tired. I’m so tired of being tired.

I’d even say I have a MILD case of you. I have a job and pay my mortgage. I know there are many others who aren’t so lucky. Yet there are things you’ve certainly stolen from me. The idea of having kids has always felt impossible. Would a baby be safe with me? Would I wake up in the middle of the night to feed them? Would I have enough energy to get them up for school, pack lunches, help with homework and attend soccer games?

Just when I thought I had you pegged, that I could predict what you’d do and how to work with you, being the inevitable life partners we are, you changed all the rules. Or something else did. Many hypotheses have been made. First it was Multiple Sclerosis, then adrenal fatigue, anxiety, depression, anemia, perimenopause or Celiac disease. No, it must be latent trauma, or a vitamin deficiency. Or maybe it’s just YOU, Hypersomnia. Presenting differently today than you did yesterday.

I aspire to be SO MUCH MORE than what I’m capable of being because of you. I’ve had to live small while dreaming big. I mourn all the time I’ve lost to sleep and can only hope tomorrow will be different somehow.

Female, 43
Idiopathic Hypersomnia, Generalized Anxiety Disorder

A hand removes a single red puzzle piece from an assortment, which reflects the tone of the corresponding letter written for the Dear Diagnosis project.

Dear Parts of Me That I Wish Weren’t There Sometimes

January 14, 2022

You’re hurting me right now. Please stop. I don’t want to shrivel into a ball of pain and tears all the time, especially not now. I have clients to work with, people who need support. I also need support. I have a new relationship to tend to, to learn about and grow with. I don’t want to be paralyzed by my fears. I know you help me sometimes and give me sensitivity and wisdom that I wouldn’t otherwise have access to. But right now, you are hurting me. I don’t like feeling this intensely worried, sad, and hopeless. I would like a break from these unpleasant feelings. How can we work together to ensure my wellbeing? Thanks for your help. Let’s stay in touch to support all of me as best we can. ​

Female, 33
C-PTSD; Anxiety; AD/HD, Autism Spectrum Disorder (ASD), Neurodivergence; Crohn’s; HSP; Grief

an author's drawing shared to compliment the letter she wrote to a series of health and mental health conditions for the Dear Diagnosis literary project

Dear Diagnoses

December 21, 2019

NOTE & CONTEXT (from the Author): I thought that diagnoses were intended to help those of us in need, by providing resources, support, and proper health care. My experiences, though, suggest the opposite. These labels overshadow a person’s true identity; they can become dehumanizing; they can actually prevent a person from accessing resources, places, and activities that might otherwise be most helpful. Most prevalent among mental health diagnoses, the associated stigma that accompanies the use of medical labels is beyond detrimental – it can actually prevent the healing from occurring, itself. I wrote the poem below in a flurry of anger felt toward this stigma and the lack of support I have battled to make sense of for most of my adult life. Ignorance and bias in not only the general population but also within healthcare, makes it hard to feel safe and supported. The words and actions of others have and continue to impact my ever-changing self-perceptions, which hinge on the incongruent ideas of what these diagnoses mean to others. A diagnosis can be frightening but, also, a relief. My experiences suggest that it’s a complicated mixture of both… 

While a list of the diagnoses seen atop my medical charts follows my signature line, I would like to explain three of them now, as the healthcare practitioners assigning them didn’t know much more than I did at the time of diagnosis. Thanks to my own research, here is what I’d like to offer as context:

C-PTSD 

I was first diagnosed with PTSD back in 1989, when I was 18 years old. Back then, health care practitioners had even less of an understanding as to what this actually meant and how best to treat the whole person. I had a particularly complicated form of the condition and the treatments that they offered then were useless to me. Fortunately, in the last 6 years there has been a surge in public interest on the topic of trauma; more funding, published research for me to read, and the development of empirically supported treatment protocols for me to explore. Scientists and doctors understand the brain better and how trauma affects it. Most seem to agree that PTSD results in a lot of sub-type illnesses (AKA comorbid conditions) and that is a there is a dynamic range to them. Some specialists (but not all) now acknowledge the resultant diagnoses of anxiety disorders, depression, eating disorders, chronic suicidal tendencies, and insomnia. Some understand that physical conditions result, too, like (for me) heart palpitations & tremors, albeit there are many more likely candidates.

C-PTSD (C for ‘Complex’) was added to the DSMV-5 only this year, which gives voice (finally) to the complexity of conditions resultant from exposure to long-term abuse. Not at all specific to soldiers and persons living in warzones, but a condition that can result from sustained &/or repeated exposure to all sorts of trauma (big T and small t-types). This is the dynamic difference between PTSD and C-PTSD: There exists long-term, repeated trauma that creates complexity in mind-body states and given that each individual is entirely unique, the symptoms can manifest very differently in each of us…

D.I.D.​ (AKA Dissociative Identity Disorder, previously known as Multiple Personality Disorder)

I also carry a diagnosis of DID, whose previous name continues to elicit images of mass murderers, serial killers, people to fear in the minds of most – thanks to movies like Sybil that undermines the curiosity and compassion necessary for an evolved understanding of this delicate condition. Today, most trauma-informed interventionists agree that people with DID were likely traumatized as young children to a point whereby the condition evolved as a means of coping – as a means (for some) of mere survival. Yet, this is new age knowledge and most Americans continue to operate in states of ignorance and out of fear, which breed’s hatred, contempt and biases. Let it be known that many of us lead successful, productive lives with careers and families; operating alongside everyone else. Like me: I have four children and was a Montessori Educator for 20 years. But, unlike most of you, we had childhood trauma and it caused our brains to develop differently – to think differently, too. The trauma that I endured interrupted my development, so my brain did what it needed to do to adapt and to survive. I have a legitimate brain injury as a result of prolonged exposure to trauma. I have different modes of consciousness and emotional reactivity – my thinking process is likely and largely different than yours once I’ve entered into a different ‘dissociative’ frame of mind. I have “spaces “ in my thoughts and in my memories. Functioning as an adult is challenging in these moments, since I am literally thinking like a child – stuck in a developmental state of mind and body. I even write with different handwriting when in these different mind states.

There are statistics and logistics to consider: Only some 20% of people who experience trauma, end up with a diagnosis of PTSD. Twice as many females than males are diagnosed. Doctors don’t know why. Only about 1% are believed to develop DID, but I personally believe it’s more than this because it’s very difficult to identify. Meditation can help. For me, it connects my mind states and retains memory. I also use sticky notes to track myself on a daily basis and make sure I am recalling things. I often admit to having a “fuzzy” memory.

Some people experience complete disconnection or separation from these respective mind states, which makes it impossible to remember what they did in one mind state when operating in a different one. I had complete amnesia about most of my childhood (and respective trauma) for 30 years. It took me a long time to realize that this wasn’t “normal”. Traumatic events experienced in adulthood, however, triggered my brain to recall much of it through what most might call ‘Flashbacks’. I called them “Time Travels” before I knew the term. During this period of my life, I suffered two years of chronic suicidal depression, insomnia, and constant dissociative issues. I am relieved to say I have healed enough – at this point in my life – through trauma therapy to not have suicidal ideations or daily flashbacks, now. 

There’s nothing wrong with my personality or a flaw in my identity – or in my identities (plural). My core is not wrong, and I am not a danger to society, nor am I harmful to others. I don’t walk around in a constant state of psychosis, although I have experienced psychosis before. I am not without intelligence, even though I don’t always have connected thoughts or sequential memory. How I think and who I am should matter, just as someone’s diagnosed illness (like diabetes, cancer, heart disease) – matters. Mental illnesses shouldn’t be separated from physical illnesses in the way that we trend towards doing. Your brain and body are intimately connected with one another, which is why my mental health conditions affect my physical health directly. It is my goal to hold my mental & physical health states out in front of me – like a sphere, where I can continue to see my whole self from all angles and perspectives. This is the key ingredient to living in peace with it all… 

FIBROMYALGIA

Fibromyalgia is another very complicated disease with which I live. It has no cure and its cause is largely unknown. People of ANY AGE can acquire it – even children, yet many doctors don’t know anything about it and some (even) refuse to acknowledge its existence! My own doctor doesn’t know what to do to help manage symptoms. She suggests a lot of things and has me taking pain medication, but there’s not a lot of information out there beyond pain management; and pain is only a small part of the actualized condition. It’s not an arthritic condition (although I have that too, which complicates all things in discussion). Many doctors seem to think that it’s an arthritis-related condition, but I’d like to argue otherwise: It’s a neurological illness that directly impacts the nervous system and causes widespread nerve-pain. Some doctors believe it has to do with swelling or inflammation in certain parts of the brain, which may be why it impacts so many things: The body’s ability to regulate temperature; energy levels (causing fatigue); sensory issues; problems with balance (so much so that I was tested for MS at one point); muscle weakness; disruption to executive functioning (attention & memory); swelling all-over; burning sensations and other inexplicable skin pain. It gets in the way of the brain’s ability to recognize pain. It impacts the internal organs, also, making my insides feel “bruised”. The condition impacts my ability to work, to go out, and to be able to do things so many others take for granted. Its symptoms are impacted by the weather, stress, and other environmental factors so go figure – it’s never the same and always changing… Just as with all chronic conditions, Fibromyalgia impacts the whole person and (inevitably) their families and friends. Compassion and patience are necessary ingredients, which is why I offer this insight AND this heartfelt poetic letter – in the name of justice: 

Dear Diagnosis
stealing away my hopes and dreams
a necrosis
on my everyday things

should this be a letter to the C-PTSD?
Fibromyalgia or Anxiety?
hey
maybe it’s to Depression
a soul sucking life draining infection
nobody can see
or
maybe it’s to D.I.D
fractured personalities
woven in complexities

Dear Diagnosis
stealing away my hopes and dreams
a necrosis
on my everyday things

What’s the point for you Diagnosis?
weren’t you supposed to help?
give resources ?
yet ….. you are soulless, ruthless
a dead prognosis
with endless medication doses

you wrap me in red stigma
chronic suicidality a magma
of heat bubbling with the complex grief
locked bars of agoraphobia on the windows
and doors…..
sometimes it’s a fucking war
against pain
inside and out

fuck you
dear Diagnosis
fuck you
did you give me any assistance?
or did you take away my existence?

which one of you should I scream at?
for taking my dreams and
exchanging it with wrath?

how about arthritis in several different forms
my spine slowly turning around deformed
how about chronic fatigue
a vampire sucking me weak
no more running
no more swimming
no more biking

no more trying

Dear Diagnosis
stealing away my hopes and dreams
a necrosis
on my everyday things

God forbid anyone know your many names
for oh….then they look at me and refrain
from seeing me anymore
I’m invisible
wearing only your acronyms for clothes

their own biases clouding their eyes
my name dies
on their lips …..

a discrimination
a disintegration
an elimination

of my voice
of my face
identity destroyed

fuck you
dear Diagnosis
fuck you

what is your ambition?
I think maybe to oppress women
maybe men too ….fuck you, fuck you

a fucking prescription to addiction
I’m to blame for

shame on my conditions
shame
shame

Dear Diagnosis
stealing away my hopes and dreams
a necrosis
on my everyday things

there no petition to chronic illnesses
the doctors & therapists
have no remedy for

just diagnosis
with no cure to explore

the doctor said once “you just need
physical therapy, herbal tea, maybe psychotherapy”…”here take these pills”

in between these appointments
I slide the hill of entropy

said her solution of the illness algebra
is just for me to somehow
“get some stamina”?
and don’t forget
oh the lovely medication side effects
of diarreah pain
a lost and foggy brain
all the energy drained

vomiting up her words while I shake
chaos smoldering in my wake
your kidding, right?
gimme a fucking break

happiness amputated
freedom barricaded
future eradicated

what have you done for me Diagnosis ?
what exactly ?
everyone said you would help
it’s written down in a sticky note somewhere
was I supposed to gain some insight to the plights?

gone is my career
friends walked out the door
I’m a burden to my family

so, I sit here with you
diagnosis, my
Dear Diagnosis
master thief of hopes and dreams
a necrosis
on my everyday things

Female, 47 y/o 
C-PTSD: Complex- Post Traumatic Stress Disorder; D.I.D: Dissociative Identity Disorder; Anxiety: Social, Agoraphobic; Generalized Depression: Major & Treatment Resistant; Fibromyalgia; Psoriatic Arthritis; Osteoarthritis; Hearing Impaired

An image selected by the author of a letter written to stuttering and published to the Dear Diagnosis literary project

Dear Stuttering

December 17, 2019

None really diagnosed you, but we’ve lived together for almost my entire life.

I tried to solve you many many times, in various different ways, but no methods ever worked for much time at all. Sometimes you are so intrusive that you lead me to think that you’re a part of me. Aren’t you?

At times I think you’re like a monster, mysterious but always showing up when I least expect it.

I know you’re dependent on me, on my thoughts, my mind, my fragilities. But I’ve not discovered yet how you work. I learnt strategies to manage you, but you still have a strong power over me, and you still hinder me in some circumstances.

We’ve lived together since I was 4 or 5, I think; I can’t remember precisely. I’m not sure about your beginning; my memories are vague, blurry, unclear. I remember in adolescence I couldn’t bring myself to go to bakery and buy a slice of pizza because it was a serious problem to me: I would certainly have blocks of sounds, I couldn’t say what I needed, just because words remained blocked in my mouth. I would go out with friends only if there were friends who helped me in ordering at the restaurant. Actually, though, in adolescence I didn’t have many friends, I couldn’t afford it.

I should be angry with you, Stuttering, but I’m not. I think you have a reason to stay and you’ll lead me to discover it, sooner or later.

But, I don’t think always like this. You make me feel little, unable, insecure – even if I’m very sure of what I’m saying. You destroy my credibility, you know? I can understand why people don’t trust me if and when I tell things stuttering. And for my job, this is not good at all. Fortunately, I believe contents are more important than speech speed, but I think also the contrary when you insinuate yourself overwhelmingly in and through my words. Maybe I should decide on a firmer opinion about this. Maybe when I decide I’ll stop stuttering. Who knows…

I’ve thought many times why I need to stutter, why I carry you around. Sometimes I forget you all together, actually I forgot you in many occasions in the last 8 years during which I did extraordinary things! You are always with me, though – often hampering me – but I’m aware I’m stronger than you. I’ve managed to get many things out of life that you doubted I could have otherwise accomplished.

I can remember a precise moment when I realize I mustn’t be ashamed: I was 18 and enrolled in a public speaking course. My stuttering was terrible, I had to struggle even when saying only a few words to unfamiliar people. Public speaking was both a nightmare and a desire. I wanted to push myself beyond my limit, to grasp the nettle. Flash-forward to the last class, every participant had to present a speech. I had prepared my speech perfectly: well-rehearsed at home with my grandma, my speech sounded beautiful. But, this occurrence is quite “normal”. I don’t hear from you when I feel safe. So, obviously, you didn’t come out until it was time to present my speech in public. I can’t even remember if I managed to say at least the first 3 phrases, but I certainly couldn’t bring the speech to the end. Yet, for the first time in my life I noticed admiration in the eyes of others. After class, we all went out to celebrate and many of them talked to me – asked me things about my life, which made me feel astonished, because in that moment I realized they appreciated me even if I didn’t talk fluently. Until then I’m always left out conversations whenever people realized that I stuttered. I suppose those people thought that I were weird. That moment was very important to me: in that moment I had learnt that I’m worthy of consideration and of esteem, even as a stutterer. Now it sounds so taken for granted, but then it was new for me.

From this perspective, I know you have helped me (and go on helping me) to carefully select people who are worth keeping close. Maybe I used you as a strategy of sorts to identify people I want to keep close, that kind of people who are patient listeners, who like what I’m saying more than how I’m saying it.

Over the years, I have become skilled and understanding why and when you appear. I’ve become good at looking inside of myself to understand you. But there are still periods in my life where I can’t understand you; times when I can’t trust you, because you tend to ruin my life: you’re so intrusive, your speech blocks are too insuperable, my words loose worth, talking becomes too hard, I’m out of breath, I’m tired after saying a single phrase… I risk not saying everything I have to say because of you! You impede me from flourishing.

During these negative periods, I lose pleasure in social interactions, and in some extreme cases, I end up avoiding the people that I care about – even if I hate avoiding them! Despite your exhausting presence, I really enjoy company; I enjoy having conversations, telling people my experiences, sharing my opinions.

As I’ve already said, I know I’m stronger than you. I’ve reached important life goals, I’m happily married and every day I nurture many beautiful projects. Currently, I need to give all of this a try in my job. My job works with words, and I deeply love it. But I’m very scared you make it impossible. So, I need you cut me some slack – now. I deserve it.

Female, Age 27
Stuttering

A woman emoting through dance to accompany a letter written to Dear Diagnosis - a literary project rooted in narrative medicine.

Dear Lupus and Dysautonomia

April 4, 2019

I wish I knew why you were given to me. I know I grew-up watching you, Lupus, destroy my mother, but never did I think you would come after me. Did I do something wrong? That’s how I feel – every snarky remark or white lie I told as a kid – feels like karma is the real deal now.

You know I remember what life was like before you tackled me, Dysautonomia. I had just started to feel like I was living on top of the world! My hair was full, my smile was bright and my passion of music and dance was strong. I was only 15 when you hit me in my heart, my dance! I’ll never forget going over that routine and suddenly hearing my heartbeat overcome every sound in that room. I swear everyone around was mumbling. At least that’s all I could make of it. I collapsed from feeling so much sudden fatigue, but you didn’t stop there. I crawled outside so everybody didn’t stop and stare. You lasted 4 hours that night; you made my heart beat fast, my vision blur, and every time I tried to get back up – my world became a giant slur. I swear it looked like everything had turned upside down in that moment. You began to break me down – little by little – every single time I flared. If it weren’t for that doctor who was willing to listen, I would’ve continued to be told I was going crazy. I might have assumed it myself…

I used to love watching paranormal shows. Through them I heard that once you found out the demon’s name, you could control their strength by using it – even pray them away. When my doctor came into the room that day saying your name – ‘Dystautonomia’ – I decided then and there that I would take your name and do the same to you. I guess you didn’t like that because that’s when you sent your friend, Lupus, to find my name. 

And find my name she did. She cornered me and stomped me down until I screamed, I give! I thought I knew pain, I thought I knew fear, I even thought I knew sadness but it was clear once she arrived – I did not… I’d been depressed before, but never like this.

What made it worse, I wouldn’t (couldn’t) look to my mom (who I always adored) because she suddenly embodied a future I wanted desperately to ignore. I saw her pain, I’d heard her cries through my bedroom wall. Little did she know, her bathroom (on the other side) was not a quiet place to vent. I brushed her hair as a kid; I held her hand when you – Lupus – attacked all that she could give. I thought I’d done my time with you through her but now, at age 19, you attacked my being!

I felt numb at your arrival. I didn’t want to sing anymore… But I wanted to dance. All I could do was dance. You see, through dance, I could express what I felt without actually admitting just how much pain I was in.

Wanna know something funny? I eventually started to find strength in you, Lupus. I started seeing my mother in myself – a strong, unapologetic fighter – doing all I could before the idea of both you took hold. But, you could sense it, couldn’t you? Because that’s about the time that the both of you paired-up to beat the crap out of me at the very moment that I thought to out-think you. To change the way I thought about you. And I almost admit your success – it many ways it worked. My blood work definitely showed muscle break down from how hard you hurt me at that point in time…

These, though, are the last words I want you both to hear me say: Go ahead and take me down – push on my kidneys, even my heart and my memory if you must. But, I promise each time I will get up! I will keep fighting in my own way. Every time I finish dancing or singing through your pain, I will be sure to thank you. Because of you, I’ve realized that nothing will stop me for my art. You have made me the artist that I am today. You have helped me see the light in my dreams, the strength in my genes. So try and take me down – I dare you, because I promise, you won’t win!

When I make it big, I’ll be sure to show the world – all of my fellow chronic disease friends (the ones whose conditions can’t be seen from the outside), along with every person that has ever doubted my strength that you – Lupus – and you – Dystautonomia – are just a couple of ants ready to be squished! That’s right – thank you – I have won, will win, am winning, not in spite of you but because of you.

Female, Age 21
Lupus & Dysautonomia

A woman of color wears a leg brace as she sits regally upon a red couch. This image was submitted to accompany a letter written to Polio for Dear Diagnosis: a literary project in narrative medicine.

Dear Polio

November 5, 2018

CONTEXT (from Project Director): Polio is caused by a human enterovirus called the poliovirus. The virus is most often spread by the faecal-oral route. Poliovirus enters through the mouth and multiplies in the intestine. Infected individuals shed the virus into the environment for several weeks, where it can spread rapidly through a community, especially in areas of poor sanitation.

In the early 20th century, polio was one of the most feared diseases in industrialized countries, paralyzing hundreds of thousands of children every year. Soon after the introduction of effective vaccines in the 1950s and 1960s, polio was brought under control and practically eliminated as a public health problem in these countries, including the United States. It took somewhat longer for polio to be recognized as a major problem in developing countries, however. In 1988, when the Global Polio Eradication Initiative began, polio paralyzed more than 1000 children worldwide every day. Since then, more than 2.5 billion children have been immunized against polio thanks to the cooperation of more than 200 countries and 20 million volunteers, backed by an international investment of more than US$ 11 billion.
​
Today, there are only 3 endemic countries: Afghanistan, Nigeria and Pakistan. Until poliovirus transmission is interrupted in these countries, all countries remain at risk of importation of polio, especially vulnerable ‘outbreak countries’ with weak public health and immunization services and travel or trade links to endemic countries. Somalia, where this writer was born, and Kenya – where she proceeded to live in a refugee camp until the age of nine; are two commonly identified outbreak countries.

Dear My Dahhhling Girl: Polio

Sometimes I wish I could punch you in the face – my body is perplexed by the dependence of leaning on a crutch. This dependence has messed up my physical structure (poor posture, a need for acupuncture adjustment and deep massage to relieve tensed muscles); all of which I’m working toward. I can’t find the right words to describe how limiting being on crutches and having to wear a 1.5 lb brace and 2 lb lift shoe – is… I ask myself: Without you, WHAT SORT OF PERSON MIGHT I HAVE BEEN? I don’t know WHO, WHAT or WHERE I could have ended up if it weren’t for you. I do know, though, the person I am today and I’ve grown to LOVE and ADMIRE her 🙂

Let’s explore what I think I might have been if it wasn’t for you – my girl, Polio. Maybe, more judgmental with people and situations? Impatient with people and situations? Unaware of cruciality – of a second chance to life? Less mature, due to the absence of life changing, permanent physical limitations? Unappreciative of good days? Perhaps, I wouldn’t even know what ‘good days’ are, because everyday can seem like a struggle with life’s little unexpected stumbles..?

Without you in my life, I might have grown up in my home country – Somalia. My family’s first reason for coming to the States was, after all, to FREE me from you. I might have been a trophy wife of a man with significant social status; who could have been emotionally abusive… Perhaps I’d have been the bearer of 6+ offspring?  A woman without a strong will? A pretty girl, who just wants to please everybody?? 🙁  Pardon the question marks – I am just not sure of the person I truly might have been, if it wasn’t for you – my girl, Polio…  Perhaps, I’d have hiked from Mexico to Canada if I’d managed not to contract you. Perhaps I would be a serial-camper – an outdoors-WO-man? Even better, I’d have taken part in a Dancing With The Stars competition or even could have been one of Beyonce’s back up dancers? Own a dance studio? Be a household dance instructor?? (I clearly long to dance – freely – free dance 🙂

Fast forward to now – the person that I believe you have helped craft: I am resilient, because I feel it in my gut that I have a purpose for this life of mine. Otherwise, you might have taken my life, just as you have taken the lives of so many other children in third world countries. I can’t treat this fact with mediocrity! I choose redemption and conviction of a belief system that cultivates daily my strength and strengthens my weakness, along with the mindset that yesterday’s shortcoming, doesn’t set the tone for today’s goals and absolutely should not interfere with what can be accomplished today.
I’m grateful for you, although you stunted the growth of my leg and confined me to a single crutch, I know life would have been much hardER to cope with, if I was confined to a wheelchair with limited mobility and access to my favorite bars and restaurants (many of which are NOT wheelchair accessible). I also consider myself to be less judgmental on the SELF and others, because you helped me to learn to accept myself – my strengths, my weaknesses, my everything. The good and the bad. .It taught me to meet people where they are at in their own personal journeys.

Thanks to you, I’ve become a seeker of wisdom on self-sufficiency. Determined to be independent – not only in physical function, but of the expectations of others. Standards of society don’t apply to me, I refuse to enforce expectations. I think that you primed me, Polio – I’ve always felt more mature than my peers. I consider myself to be impeccably adaptable, which is probably rooted in my skills to accept and meet myself where I’m at. I am selective with the type of people I bring into my life, the types of conversations I participate in, the types of books I read, the type of music I listen to, the type of food I eat, the type of water and liquid I take into my body, and the type of environment I reside in – all of which are probably influenced by you. I choose to exercise my options because I’ve promised my physical body that I will exercise huge discipline to bring only joy and wisdom into this life that we share… I will honor and protect this body of mine with you at my side – whatever it takes.

Sincerely,

Female, Age 30
Poliovirus with Foot drop

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