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
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.
AD/HD, Generalized Anxiety Disorder, Eating Disorder : Anorexia Nervosa
That alone would be sufficient, but this letter is not for me or for you. This letter is for the others that read it to help them understand the war you wage and the extreme measures I must consider to keep you managed.
To be fair, doctors fail to have a consensus if the symptoms I experience are the PTSD, the saucier version CPTSD, MDD, or any of the others listed in my medical chart. You hide in the darkness of all those letters and let your symptoms do the work. You use the self-inflicted injuries to muddy the waters for my care and create distance between myself and everyone else. I have come to wonder regularly if the violence is not simply maladaptive coping, but an attack on this malicious darkness that infects my reality. I contend that the violence is actually a successful coping tool against you, but we will save that argument for another venue… Who are you – really – and would it make any real difference to know you by a single name?
You created an environment of toxic thought; focused almost exclusively on suicide. The lines between ideation and intention blurred to the point most doctors close to your darkness inside me agree that it is all intention at this point. In the beginning, a day or two here and there you attacked my mind with the “need” to die. Decades later we dance for 8-12 hours a day, waging a relentless trench war for every cell and protein string in my mind.
In less than a month, your attempt to end the war 10 years ago will have failed. Many at the time called it an act of god, part of a divine plan that you failed to end my life. The cocktail of drugs, so accurate I rarely share it outside of a conversation with professionals. My rage and the adrenaline it offers, more likely for my salvation. For more than 24 hours after that battle, your plan left me helpless, alone, battered and alive on the floor. Help moved me to a couch that next day and for the better part of a week I laid helplessly unaware of anything, as my body cleared out your attack.
Five years later you attacked on two fronts. The first attack that year, another overdose. The battle winning you 3 days for me in ICU that have your allies, the nurses, an opportunity to express this painful emotions that blamed me for your attack. The second, a less eloquent and far more successful attack with a tourniquet around my neck. Your second attack left me “black” and “cyanotic” on the psych hospital bathroom floor. An innocent found me and was able to bring me back. You had failed to win this battle, but the war was forever turned in your favor by publicly defeating me. Nurses even angrier, doctors scared, all joined your assault on me. Leaving me in isolation for a week, in that pink paper gown, in that empty room - I sat as a prisoner of war, held by your new allies; my so-called ‘saviors’.
5 years later we return to the present and the cycle of war is escalated to unimaginable heights. I have new allies, doctors with a better understanding of how you work. While you are defeating the new weapons (ketamine, marijuana, etcetera) that they have been using, you still struggle to bring this war to an end. My team agrees you have an edge as we enter our heightened season of battle. You had a secret ally in COVID that decimated most of my support structures. While I survived last season, you successfully utilized COVID to maintain a foothold that successfully prevented my season of recovery.
As we approach the anniversary that your sadistic, rapist began his season of torture to break me down, remember not the torture he inflicted, the repeated violations of my body, the deep wounds that still bleed from those battles long ago... Remember the rage that defeated him in the spring. That same rage beat you 10 years ago as you tried to end your war on me. That rage that has drawn a line so deep that for 5 long years has held the line against you.
Could this current push I have been experiencing be your last gasp? A desperate attempt to end a war you may have already lost? Most of me wants you to win, most of me betrays me to assist you in completing suicide. Yet, that rage of an 8 year old little boy who stood up to your accomplice stands in your way again as it always has since awakened by your ally. That rage that draws a line so deep in my flesh that the scarred walls keep you helplessly out of control of ending the war.
I acknowledge you have kicked my ass three times since this current war started on January 21, 2008. I also realize that 99.9352051835853% of the time your battles FAIL to convince me in taking serious action to ending my life. Most important you have failed 100% of the time in being able to do it – I’m still alive, aren’t I?? (Insert middle finger emoji and big smiley face here!)
You and your allies have relentlessly attacked me for more than 3 decades. Your armies vastly outnumber my allies. You even manipulate me into helping you on a regular basis. I have the mental and physical scars that show the damage you have done in decades of war. On a day that started where I thought you might finally be on the verge of winning this war - in what has felt like our final battle - I stand victorious in holding off this epic battle. A battle that only occurred in my mind…
I may not win this war. Hell, I believe I want you to win this war at times. Most of my doctors will concede when pushed that you will win this war, but for tonight I stand up to you bloody and bruised from battle to say one thing. FUCK YOU!
Male, 43 Years Old
CPTSD, MDD, Agoraphobia, Generalized Anxiety Disorder (GAD)
NOTA (Scritto da Francesca Fontanella): Valorizziamo qui l'autenticità di questa lettrice che parla apertamente delle sue esperienze come vittima di abuso sessuale e rispetto al tema del suicidio. Se sei o sei stato/a anche tu vittima di abuso e questa lettera ti ha colpito/a, cerca aiuto senza attendere. Puoi contattare 02 2327 2327 o mail@mica TAI. Ci auguriamo che i contributi di persone coraggiose che scrivono le loro storie possano, tra le altre cose, costruire la strada per la salute di tutti.
Oggi ti parlo Depresione. Sono un poco scomoda perche ti devo parlare in una lingua che non domino propio e mi sara difficile raccontarti tante cose.
La prima volta che mi hanno parlato di te avevo dicianove anni. Ho voluto finire con la mia vita dopo di vivere una tristezza che non finiva mai. Il psichiatra ha detto che ero depressa e che mi sono fatta male perche avevo bisogno di piu attenzione. Ricordo che pensavo che il dottore era insoportabile, che era pieno di se stesso e che non aveva nessuna conessione con me o con quello che vorrei aver detto. Ma non potevo dire che sonó stata stuprata per anni per mio fratello e I suoi amici.
La prima volta avevo 8 anni, non ho capito niente, soltanto sapevo di aver sentito tanto dolore che mi sono fatta adosso e cuando arrivai a casa mi hanno sgridato perche ero una sporca che non era neanche capace di andare al bagno. L’ironia piu grande e che tutto e sucesso nel pavimento di un bagno cosí piccolo che appena se potevo muovermi. Non ho capito il stupro cuando avevo 8 anni, neanche dopo cuando continuo per due o tre anni piu, incominciai a capire cuando avevo 12 o 13 anni. Cuando sono arrivata a 19 e ho avuto il primo fidanzato e stato cuando ho capito veramente quello che mi e sucesso e mi sentivo sporca e mi odiavo a me stessa, non volevo uscire del letto, sentivo che tutti potevano guardarmi con schifo, non volevo incontrarmi con mio fratello perche l’odiavo cosi tanto che avrei potuto anche svelare il segreto.
Ma cosa sei deppresione? Credo che non esisti veramente, non sei idee nella mía testa, non sei paura di vivere, non sei neanche la tristezza, non sei il vuoto che sei stata cualche volta. Non sei. Non so nemmeno cosa sei, sei questa fatica di vivere? sei questa difficolta di lavorare, di alzarmi del letto, di parlare? sei questa solitudine? sei questa colpa perche sono nella mía stanza invece di stare con le mie maravigliose figlie, invece di alzarmi a lavorare per procuraré I soldi? Al meno prima avevo la scusa di avere troppo lavoro, ma, da cuando incominciai la cuarentina non ho ancora potuto lavorare neanche un giorno.
I farmaci non mi hanno fatto mai niente, l’efetto e ancora peggio perche perdo anche quella piccola parte di me che e ancora lucida e sa ridere, parlare, piangere, incazzarsi, amare. I farmaci mi levano tutto e divento una cosa che cammina senza sentire niente. Ho provate tutti I farmaci e anche me li hanno levato tutti in tanti anni di raccontare lo stesso a psicoanalisti, humanisti, condottisti e cualche altra terapia in gruppo.
Veramente mi ha fatto been la terapia, stavo molto molto meglio, ma non so cosa e accaduto in cuarentina che sono arrivata di nuevo in fondo.
Anche ce qualcosa che voglio ringraziarti deppresione, per te ho conosciuto la morte, ho tentato di arrivare li 3 volte, fino che sono arrivata all’ospedale senza polso, avevo 23 anni. Non mi e piaciuta la morte, ero ancora viva e sentivo tutto anche se il mío cuore non sbatteva piu, mi hanno fatto male per poter ritornare e li ringrazio. Non mi e piaciuta la morte e non sono andata mai piu. Qualche giorno dovro ritornare e ho la speranza che questa sia una morte diversa di quella che ho vissuto prima. Tante volte ci ho pensato sopra e credo che non si puo morire apposta, devi morire cuando devi morire, non prima, non dopo. Forse cosi la morte sia diversa. Anche Devi vivere, la vita e la morte sono una stessa cosa che sono io, qualche volta morta in vita, qualche volta vita nella morte.
Ho molto da fare e voglio alzarmi dal letto.
Fémina, Età 54
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:
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…
(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 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: