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Letters written to problems, not people – by everyday champions, like you.
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Dear Idiopathic Hypersomnia,
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
Dear Postpartum Bipolar
What you didn’t tell me about the postpartum period is how my hormones would send me on such a roller coaster that the old lady in line at the pharmacy could make me cry within thirty seconds, as she inched closer and tried to breathe on my newborn during a pandemic.
What you didn’t tell me is how I would lose my sense of self in both good and bad ways, how I would go a bit crazy. How I would dance and hula hoop on the sun-kissed deck at 6am before the baby woke up, how I would cry with joy and swelling emotion as I listened to a favorite song. How I would experience a manic episode starting a week after the baby was born.
You didn’t tell me that I would be awake at 1am with inspiration flowing, jotting down idea after idea, trying not to wake my spouse in bed with the light. That I would be shopping online at 3am, researching coupon codes and handy household items such as a pot lid holder.
You didn’t tell me that during my mania I would realize at my core that I needed to quit my job, that it was making me unhappy and sapping my creative energy. That I would brainstorm dozens of different career possibilities including inventor, blogger, and house organizing consultant.
You didn’t tell me that I would be so uncharacteristically friendly and talkative that even the Sprint customer service representative and the staff at the emergency room would become delightful conversation partners.
You didn’t tell me I would be so irritable that I would push away anyone who tried to tell me how to take care of myself and my body, how I would nearly burn bridges with loved ones. That I would get annoyed at the midwife office when they asked me if I was seeing my psychiatrist regularly.
What you didn’t tell me is that months into my recovery, the emotional wounds of the postpartum period would still sting. That I would cry when the doctor claimed I had psychotic symptoms or when my spouse recalled the ways I was not present for my family during this time. That I would feel like less of a mother for missing some of the key moments during his first month of life.
You didn’t tell me that this would be the most carefree I had ever felt in my life, despite the insomnia and impulsive behavior that came along with it. That I would giggle in the bathtub, that I would move my body without inhibition, and that I would feel – for the first time in my life – absent of worry and anxiety about what was to come next. That I would recall this time period with conflicted feelings yet deep down, I would long for that sun-kissed sweet feeling of freedom as my hips swayed through the morning air.
34, Female
Postpartum Mood Disorder/Postpartum Bipolar
Dear Parts of Me That I Wish Weren’t There Sometimes
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
Dear Diagnostic Labels
To all the diagnostic labels that have tormented me for as long as I can remember: You are not welcome in my life. From a child you lied to me saying I was broken and cant do the things I want. You tried very hard to prevent me from studying and just want me to die. I don’t like your plan for my life and you need to leave me alone. Stop trying to recruit friends like Drugs and Low Self-Worth to trick me. I am sick of you and all your rubbish. My life is precious and lots of people really love me. You try to destroy my relationships and everything around me. I am finishing a Masters degree and have shown you that you are not welcome. It is time to go! Enough is enough you put me in prison and made me homeless. You truly are a horrible piece of work! There is nothing you can do to stop me from living a good life now. I will continue to study and use all that I know about you to help others.
Your worst enemy,
Me
Male, Age 33
CPTSD, D.I.D., AD/HD, Borderline Personality Disorder w Antisocial Traits
Dear Perfectionism
I spin, twirl, shake, leap. You’re still there as I watch others. You’re in my mind as I create. You’re telling me I’m bad – I’m going to fall. I try to ignore you. I try, I try, I try but, I can’t multitask! As I forget what’s going on, you come back stronger.“You’re going to fall, you’re going to fall,” you say. I continue to try and ignore you. You’re going to fall, you’re going to – BAAM. There, Perfectionism, you got your way. I’ve fallen and broken my arm, again. Just like before. And now, I can’t play.
Female, 14 years young
AD/HD, OCD, Panic Disorder… Perfectionistic-Thinking
Dear ADHD
I never got to thank the person who introduced us. It’s someone on twitter, and I’ve been too shy to tell them. Also because it happened years ago, and if I tell them now it’ll look like I’ve had this gratitude for them kept hidden for so long – it’s almost stalkerish and… WAIT.
This is not central to what I wanted to tell you. I think.
Because I am not sure what I wanted to tell you. I saw this post on Facebook about writing a letter to ADHD and I thought it sounded great, since, I mean, I’m a writer and I have ADHD and I also happen to study creative writing as a learning and therapeutic tool so that’s, like, right in my corner!
Also it’s 3:45 pm and I’ve basically only had breakfast and sent out 4 emails today, and I can’t seem to be able to start on any meaningful task so maybe doing this can save the day?
Anyway that is to say I haven’t really taken the time to think about what it was I would tell you about in a letter.
It’s funny we’ve been formally introduced so late in life. You knew my brother first, over 20 years ago, when he was 7 and I was 9. We came really close to meeting back then – at least physically – I was just out there in the waiting room at his psychiatrist’s office. What if we’d been introduced then?
It wasn’t easy for my brother. Not since, like, school began. He’s doing great now – so great! Not in a classical way, don’t get me wrong. He’s not rich, nor does he have a fancy job. But he’s grown into a resilient, reflective, creative, curious and – frankly – extremely hard-working human. If more people were like him, or more accurately, if more white cisgender, straight dudes of the western world were like him, this world would be a lot better.
It hasn’t been easy for me either, mind you. I was good at school, yes. I would say I was a little too good at school. Kind of like it was the one thing I had going for me. Which it was. Because I was an awkward and anxious kid with existential questions and no one to help me out with that.
I mean I knew I was an awkward, anxious kid with existential dissatisfaction back then. But I didn’t realize that there might be someone to help me out with that – I also didn’t know it was an option. I also didn’t know a couple of other important things – I didn’t know I was queer, nor did I know that I was neurodivergent. I didn’t know you personally, yet : ADHD.
So, when things kept getting harder for me, I blamed the one thing all of these things had in common. I blamed me, and I tried to fix the problem : Me. I tried very, very hard to fix : Me. And how does a teenage AFAB person fix her*self , you think? Well, yes of course : Dieting. Dieting harshly. Dieting to counteract my use of food as a source of dopamine (something I know now but didn’t know then). Dieting to look more like the girl I was sure I wasn’t good at being. Dieting to prove to myself I could have control over my life. See : Dieting was the obvious answer to just about all of my problems.
Now, ADHD, you and I both know how things lead to other things. You and I also both know how to take things a liiiittle bit to the extreme. So, it shouldn’t surprise you too much when I tell you it took only about 3 weeks for the dieting to go full-blown Anorexia.
Cue my first very-own psychiatrist. And then another, and then another, and then another. That is not when we met, though. Not in a psychiatrist’s office albeit the very place one might go to find you.
We met like one meets in the 21st century : WE MET ONLINE. Through the tweet of an internet’s intimate stranger. We met long after my eating disorder had resolved, leaving almost no trace. We met after I lost jobs, dropped out of colleges, after I had almost given up on long-term partnerships. We met after I came out. We met when I had nearly exhausted all possible ‘fixes’ to the problem that was : Me.
We met after I had NOT grown-out of : constant overwhelm, late payment fees, library fees; forgotten this, forgotten that; super dramatic love interests(do-pa-mi-ne!); missed deadline, missed deadline, missed deadline; shame, shame, shame; and loneliness.
We met when I was about to turn 30. Like, literally – I started the day of my 30th birthday with yet another psychiatrist appointment. And then – do you have time for another plot twist??
Okay. And then, I dropped out of appointments with her, because I was deep in administrative procrastination and couldn’t deal with my health insurance card renewal! Of course I was ashamed to tell my psychiatrist’s assistant, so I lied about what was wrong with my card, and at some point became too ashamed to go back there… Yes, I was paying for that health insurance but no benefits at that point in the game.
I was in quarantine with all my flatmates in April 2020 of the corona-era when my (6th, I think?) psychiatrist called and woke me up to let me know : all tests confirmed the suspected diagnosis. I had – well you know already, and so did I. I had you – ADHD. .
It was the second day of quarantine and the world outside, out of reach, was slowly realizing what the heck it was in for. At that point in time, I was worried about my sick flatmates. I was scared of getting sick myself, even if I was just 33. So I didn’t cry of relief that day, nor the day after, nor the day after, and so on, and so forth. I didn’t celebrate this reckoning then but, maybe, hopefully – I will, someday soon.
The meds are helping. My life is some kind of a mess still, but I am not. And I know now – with certainty : I am not.
I’m doing great. Not in a classical way, mind you. I am not rich nor do I have a fancy job (not anymore, at least, and probably never again). But I believe that, if more people were like me, or – to be accurate – if more AFAB white people of the western world were like me, the world might be a better place.
Nice to have finally met you, ADHD.
Unidentified Gender, Age 34
AD/HD, Generalized Anxiety Disorder, Eating Disorder : Anorexia Nervosa