Read

Letters written to problems, not people – by everyday champions, like you.
Please consider engaging with the content you are about to read.

An eviction notice posted to a wooden door selected to accompany a letter written to a painful condition at www.DearDiagnosis.com

Dear Diagnosis (AKA One of my Shitty Roommates)

August 1, 2021

I was glad to finally meet you face-to-face, after ailing me for so long. The story started about 10 years before I even knew your name and while out on my adventure to find you – during which I managed to pick-up some other annoying housemates along the way. You are not a very tolerable roommate, which I do not appreciate. You embarrass me. You depress me. You raise my anxiety. You are debilitatingly painful. In an effort to evict you, I had a few procedures. Thereafter, your name stayed but your essence was gone (hooray!) Until now, when you birthed your way back (are you fucking kidding me??) Just when my life was pain free, you moved back in without my consent!

Well, I’ve got another eviction notice coming your way: This is temporary housing. Your name may be on the lease in MY body that we share, but I don’t have to tolerate your obnoxious ways nor will I acknowledge you once you’re gone. I will see the doctor Friday in hopes of scheduling another eviction. You may never be gone permanently – damn these tenant ‘rights’ – but I will not allow your shenanigans to hurt our household, as I have in the past.

Ouch Ouch Go Away,

Female, Age 40
Pudendal Neuralgia, Endometriosis

A snake in the grass, just like the back pain that plagues the writer of a letter posted to the Dear Diagnosis project.

Dear Back Pain

December 6, 2019

You have been with me for 20 years now – since I was 14 years old. You are like a snake in the grass, striking when I least expect it. You took me down for the first time when I was just a teenager. There was no accident or trauma. Just a family history that nobody thought would manifest so young.  But, over the course of an hour, while I was warming up for a volleyball game; I went from being a carefree kid to being carried out of the gym by my father. And, just like that, you changed my life forever. You caused a teenager to become knowledgeable about pain meds, acupuncture, massage therapy, and the threat of surgery. I started to figure out what ‘herniated discs’ were, as well as ‘spinal stenosis’. One doctor even said that I had the back of an 80 yr old woman – isn’t that what every teenager wants to hear?!?! There was an entire week spent crying at home thinking that I would have to be homeschooled. Then, there were little things like never wearing a backpack again… not being able to go on amusement park rides like a normal teen. My afternoons were spent at physical therapy rather than after school activities. When I took the SATs for the first time, it was while on serious pain medication – Vicodin. Back then, I’m not sure how much I understood about the dangers of these pain medications. I understood that I shouldn’t abuse them, however, this was all before the opioid crisis and before it made front page news. It wasn’t until I got to college and some girls in my dorm tried to buy them from me that I truly understood…

Fast forward to when I had my first back surgery. A 19 yr old shouldn’t have to deal with that level of pain and fear.  I was incredibly lucky that the surgery was successful for a time. After that, like any other snake, you slithered away for a few years. I was happy again, able to live my life, able to ALMOST forget that you existed. And then, out of nowhere, you came back – again with no warning! So, I coped with you, again, for another 4 years. Doing everything I could to keep you at bay – medication, ice, physical therapy, etc.  Until finally, 3 months before my wedding, you were so debilitating that I needed another surgery. By that point, you had caused (what I now know is) permanent nerve damage in my right foot and ankle. They call this “partial foot drop.” This later led to a stress fracture in my foot and long-term use of an orthotic brace. I’m ashamed to admit that I was horribly embarrassed of the knee scooter I had to use when my foot was broken – I didn’t want to go out very much in public with it. I continued to have embarrassment over the orthotic and accompanying ugly shoes that it entailed. Let’s be honest, I’m a woman and shoes matter!

I didn’t think you could possibly get worse, but last Christmas Eve I ended up in the ER – after collapsing in front of my children due to debilitating pain. You caused me to leave my 18-month-old twins on Christmas Day; to fly home from vacation so that I could be closer to my doctors! A neurosurgeon actually told me not to lift my children out of their cribs… but HOW?! I’m their MOTHER. Because I wasn’t able to pick them up I had to watch them go to others… it BROKE MY HEART.  There are no words to describe how angry I was at you for getting in the way of my relationship with my children. Throughout my life, you have created constant battles between the real me and the anger and sadness that slithers around with you. You trigger my anxiety. You are an awful, venomous snake that I would do anything to kill! So, there I was again: Fearful of needing an even worse surgery that would require both a neurosurgeon and a vascular surgeon; that would put me down for 3 months minimum with possible side effects like permanent loss of bladder control, serious vascular issues, etc.

I try to remind myself that you haven’t beaten me. After all, I’ve been able to achieve my goals in life… I have a Master’s degree and a successful career. Even better, I found a man whom I love and we have 2 crazy, funny, exhausting, beautiful children. But, despite my attempts to live in gratitude, the doubt continuously creeps back in… How long will I be able to manage without the next surgery? Will I even be able to walk by the time I’m 50?  Will I be able to continue to work? Will I be a burden on my family at some point? Am I already a burden on my family?! Will my kids understand why mommy can’t run with them, pick them up, play sports, go on a boat ride, go on a roller coaster… etc, etc, etc. 

And so, the cycle continues. Currently, Back Pain, you are not a snake hiding in the grass, you are fully visible. I have to take medication round the clock to keep you at bay. Each day seems to be a new challenge to overcome but – I’m still here. You have not beaten me. Today, I got to wake up and hugged my children. Today, I chose to be grateful for that. We’ll see what tomorrow brings…

Female, Age 35
Herniated Discs (L4/L5 & L5/S1), Spinal Stenosis

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