I have a friend -it's me, I'm the friend- who is currently in the process of being diagnosed with narcolepsy -the thing when you just kind of fall asleep at random times- after having been diagnosed with potential ADHD, severe major depressive disorder, and previous to that; “lazy”. Turns out, falling asleep in pretty much every class in high school, my ex-boyfriend's graduation ceremony, while taking the SATs, sleeping through dates, oversleeping and being constantly late for things weren't just because I had a weird attitude problem. So after a rather expensive trip to the neurologist and preliminary diagnosis, I will be having fancy wires stuck to my head while I take many, many naps and someone who spent 12 years in medical school will spend their weekend watching me sleep. The mildly creepy anecdote aside, I am in the process of receiving an adult diagnosis for a condition that I have realistically had since middle school. And I have some thoughts.
Sign of the Times
I am not the only poor soul running around with an adult diagnosis. As we roll into the social media informed reality of our times, we must take into account that the way information spreads is fundamentally changing. Now, more than ever, we have the ability to share our experiences with as many people as possible. This has enabled thousands to gain access to stories that they relate to. Stories attached to a diagnosis. Many of us have realised that perhaps our lifelong tendencies of forgetfulness, distractibility, sensory sensitivities, tics, excessive sleepiness etc. are not “normal” -whatever that means- and that there is a reason we are the way we are. These hunches have led to further research, usually a deepdive encouraged by a social media algorithm, which may or may not have led to a professional diagnosis.
In a post pandemic world, mental health related issues are on the rise. This rise when paired with long waitlists and expensive mental health care, people are understandably turning to the internet for answers (The Guardian, 2023). Furthermore, social media has granted us access to the voices and experiences of marginalised or clinically underrepresented communities (Lotun, 2022).This new inclusivity and accessibility of information is prompting thousands of people to seek diagnoses and treatment to substantially improve their quality of life.
Pitfalls of internet informed mental health
Considering the fact that adult diagnoses are usually a result of symptoms missed during childhood or adolescence, self information plays a large part in noticing the problem. However, I would like to make it clear that an internet-informed self-diagnosis has its rather sizable and unignorable pitfalls. Anyone can put up a random characteristic and claim it's a symptom of a disorder or illness. Other people can then pick up this pseudo-fact and run with it, causing the misinformation to spread and gain authority in peoples eyes out of sheer replication and reiteration. Some may claim to be healthcare professionals in order to feign authority behind their statements. This unclean information is then further aggravated by our confirmation bias. If we see enough content that convinces us that we may have x, y, or z disorder/condition/disease our brains are likely to notice other facts and figures that confirms this belief and omit the ones that disproves it. We’re hardwired that way. But our wiring, unfortunately in this case, is prone to fallacy.
Moreover, most of us are not medical professionals. We are under informed in an array of other reasons we may display certain behaviours or symptoms and try to fit into the box that sounds closest to the truth within the rather narrow parameters of our medical knowledge. Oftentimes, adult diagnoses are complex and intertwined. Someone with ADHD may have developed anxious or depressive tendencies which can lead to misdiagnosis. Someone with autism (AD) may have been misdiagnosed and treated for an entirely different disorder, obscuring their AD symptoms. A dyslexic may have spent their lives being told they are unintelligent, leading to severe self esteem issues. Honestly, you can mix and match different symptoms, diagnoses and the consequential effects and come up with a million case studies. If trained professionals can misdiagnose and miss diagnoses, we absolutely can too.
All of this being said, self information is often ridiculed in the context of medicine: “you Google a headache and it says you have brain cancer” “everyone has ADHD these days”. Yet there are merits to seeking out your own answers. Even if you are wrong about what you might “have”* seeking a clinical diagnosis and discussing your thoughts with a medical professional is much more proactive than letting it fester. Furthermore, no one knows your experiences and body like you do. If something feels intuitively wrong, it is worth looking into.
A physician who remained anonymous for the privacy of their patients was cited in the Guardian with the following quote: “While some cases did go on to have the illness described, most did not. It was a fine balance between ensuring the patient feels heard, while also making sure they were not inappropriately diagnosed, as a diagnosis often came with prescriptions that carry side-effects and costly treatments.” If self-diagnosis is viewed as a starting point and not a be all and end all, it can be constructive. However, it should be taken with a pinch of salt for the reasons mentioned above.
*This issue focuses on adult diagnoses so I am using the word “have” in reference to clinically diagnosable conditions. However, even in the absence of a psychiatric or neurological condition, your experiences and worries are valid. Disruptions in your peace of mind and body are worth investigating whether they are classified as a condition or not.
An adult diagnosis takes a sizable emotional toll. You find yourself at the centre of a cacophony of emotions ranging from relief, resentment, frustration, to validation. There is an indiscernible grief that comes with it. You grieve everything that could have been and everything that never was. When you, -as an adult who has experienced an entire childhood, an entire adolescence, maybe finished a highschool degree and then some- are told that this whole time you had x,y,z condition, it brings up a myriad of emotions. There is a knee jerk reaction of frustration. Being told, after potentially decades of struggling with some unknown, invisible adversary that you were treatable this whole time feels like a spit in the face.
You grieve the versions of yourself that never existed because you had hurdles you didn't even know you were jumping, tripping over, getting up and trying again. There has been support, medication, and treatment plans out there that have not been available to you. You may grow to resent the people who don’t need to do the extra work. You grieve the accomplishments, the potential career paths, the relationships damaged, the hours and days lost to your conditions hindrances. More so, you grieve the futures that may never exist due to your diagnosis. I was told by the neurologist that I will never have a “normal” sleep cycle. I will never be the guy who naturally wakes up even at 8 am. With that statement, there goes the dream of working on a farm in Southern Italy and tending cows. When I asked about potential children and waking them up for school in the mornings the neurologist replied “marry a morning person”. And with that statement I grieve many tired eyed conversations that I will inevitably sleep through; the cups of coffee at the breakfast table with my kid.
When we exist in a productivity driven hustle culture filled with girl bosses and “self made” millionaires, deviation from functionality feels like a luxury not many can afford. It doesn’t matter if your body can’t sit still, if it needs 13 hours of sleep a night, if a 9 to 5 feels like literal torture for your synapses. To partake in the rat race you have to be malleable. Because if you don't bend, you break. So we do our best to mask, adapt, caffeinate, medicate, mediate. Having to function in a neurotypical and ableist world, allowing yourself your symptoms feels like a treat.
Yet, despite all the limitations that will inevitably materialise as a consequence of my diagnosis, as I was sitting in the doctor's office the feeling that reverberated and resonated the most was immense relief. I feel validated in my experience and the knowledge that my behaviour is not because I am lazy, have a bad attitude, or an irrevocably miserable git. It provides a relief from every negative value judgement I have thus far assigned myself in relation to sleep. Despite being told that I will never have a “normal” sleep schedule, I feel anything but defeated. Because now when I sleep through eight alarms in the morning, and don't become sentient until 2PM, I can somewhat mitigate my frustration. I can remind myself that I am not a failure for failing to wake up when I wanted to, but that I am simply different.
Before my diagnosis, I started every day with an immense feeling of defeat and disappointment in myself because I would fail to get up on time. This -surprise surprise- aggravated and stoked the fire of my negative mental health. My unidentified sleep problems damaged my self view in such a fundamental way that I had slipped into what felt like an untreatable and unbeatable depression. While I am now medicated -and proud of it- the knowledge that I am not all of these negative adjectives that I, and the rest of a productivity driven society, had attributed to me is liberating. I still mostly wake up at 2PM, but without the existential dread. I’m not so hard on myself when I don’t manage to get all the things that I wanted to get done sorted before all the shops close etc. I can always stop by the bank tomorrow. I know to space out the tasks that exist within “normal people” hours -them 9 to 5 folk- over a few days because I am 2pm to 4am folk.
Ultimately, an adult diagnosis may feel like a discouraging or disappointing development. But most of us have had our conditions for a long time, just without a name to the face. The presence of a diagnosis doesn't make our symptoms or experiences worse. It simply validates and provides relief for them by making treatment accessible. Furthermore, treatment is not always exclusive to medication but also holistic approaches with supplements, new routines and diets. Whatever your route forward from your diagnosis may look like, the fact of the matter is that the clarity it brings is only constructive. Hear it, digest it, accept it. And things will start to fall into place.Disclaimer: This issue refers to late diagnosis of congenital or hereditary neurological and psychiatric conditions and neuro-divergences. It is applicable to physiological conditions only to the extent that one may relate to the issue. It does not claim to encapsulate every type of diagnosis and acknowledges that the experiences of regressive or life threatening diagnoses have different psychological connotations than those covered in this article.