I recently got a question on Tumblr asking if I support self-diagnosis. I provided a brief answer, but I wanted to expand upon that and really write out my reasons for supporting self-diagnosis. I know that this is a very contested matter across Tumblr and the blog-o-sphere with many people standing strongly on either side of the debate. So let’s delve into the reasons I support self-diagnosis as well as exploring my personal history with self-diagnosis and the psych industry.
I was 9 the first time I went to see a therapist. My parents had just discovered that I was lying about being sick as well as making myself throw up in order to get out of school. I was bullied significantly throughout school and I had reached a breaking point. School was so dreadful that I was willing to be sick in order to get out of it. So it was that I was sent to a therapist. I don’t remember much about this therapist aside from playing Boggle together and ripping up phone books, but that was my first introduction to the world of psychiatry.
When I was 11, I was put on an antidepressant with the hopes of helping the horrendous migraines I was experiencing on a regular basis. The medication helped so well that after a year or two I was taken off since I was no longer experiencing migraines. A few months after this, I fell into a serious bout of depression. By 13, I had begun cutting myself to deal with feelings I didn’t understand. My journals from this timeframe are eerie to go back and read as it’s hard to believe that a 13 year old could have written of such pain.
So it was that at 13 I began my journey into the psychiatric field that would last for about a decade. The psychiatrist I went to see was a wonderful woman whose care I remained in for over five years until she transitioned into in-patient only treatment. She put me back on the antidepressant as I was showing clear signs of depression. The meds helped to alleviate things, but things still weren’t right.
When I was 15, I was on a school trip to NYC. We were riding through the Lincoln tunnel when, suddenly, there were ninja like figures scaling the walls of the tunnel and making their way to the bus I was on. Soon they boarded the bus and were snaking their way through the rows of seats to get to me. I was terrified. I managed to tell my friend what was going on and she tried to assure me that there wasn’t anyone there. When that failed, she hugged me close to her and told me she would keep me safe. The rest of the trip, I was a shell of nerves and paranoia, constantly checking over my shoulder for the dark figures that I was sure were coming to get me.
The next few years were a mess of hallucinations, ever changing meds, and a rotation of therapists. The hallucinations continued in a myriad of ways. There were voices telling me that they were coming for me and would hurt me and those I cared about. There was the young girl in the tattered pink dress with slit wrists and a slit throat holding razor blades saying “Come play with me!” Throughout all of this, I was also experiencing intense mood swings. When I was depressed, I was suicidally depressed. When I was manic, I barely slept and was constantly doing things. My psychiatrist struggled to pin down what was going on. I spent several years with the diagnosis Mood Disorder NOS, which is basically the catchall for “We know there’s something going on, we just don’t know what.”
My senior year of high school, I was hospitalized twice. The first was after I began seeing my dead friend walking around campus and lost it. The next was after I spent a month being followed by a dark figure who then slit my boyfriend throat as I watched the blood poor down. Both hospitalizations were for med management so that they could quickly change my meds and keep an eye on me. Even after two rounds of inpatient care, I still didn’t have an actual diagnosis, now having spent over four years in the psych industry.
As I transitioned from high school to college, I had to find a new psychiatrist because mine was no longer taking patients. The man I stared with was awful. He didn’t listen to me, talked over me, and based a lot of his decisions on assumption. But I stayed in his care as I went off to college to start the next chapter of my life.
For the first year and a half I was at college, my symptoms were manageable. I was still hallucinating some and my mood swings were something special, but I was able to get by. That is, at least, until I couldn’t. Spring semester of my sophomore year, I had to leave school to focus on my mental health because I was no longer able to get by with things the way they were. So began the spring and summer of frequent psychiatrist appointments, lots of med changes, and, finally, a diagnosis.
By the time I had to leave school, I had begun researching what was wrong with me. I had grown tired of waiting for doctors who had no answers and seemed to shy away from any possible diagnosis on the schizo- spectrum. So I researched and read and read and examined myself and researched more. I read through the DSM-IV. I read and reread the diagnostic criteria for the diagnoses that seemed closest to what was going on with me. Finally, I reached the conclusion that schizoaffective disorder fit best. I read posts from other people with schizoaffective and say myself reflected. I analyzed every aspect of myself in comparison to the criteria and felt confident that I had found the best fit for my troubles.
Over the summer, the psychiatrist I had been seeing gave up. He sent me for a second opinion because he couldn’t figure out what was going on. (side note: it was a special moment to be told that I was so perplexing that I needed a second opinion. I don’t think I’ve ever felt more alien and deficient than I did in that moment). So I went to meet with this new psychiatrist. Our first appointment was about an hour. I went over my full history with him as well as my concerns at the times. By the end of that hour, he diagnosed me with schizoaffective disorder, the same diagnosis I had given myself.
Almost 10 years, 3 psychiatrists, 2 inpatient stays, and a myriad of meds were what it took for me to finally receive a diagnosis. And yet, it was in an hour, one single hour, that a psychiatrist diagnosed me with schizoaffective disorder. I had spent hours and hours of time each week researching into possible diagnoses for myself over the course of a couple months. At that point, I could quote the DSM and knew exactly why this diagnosis in particular was a good fit for me.
I tell this story, my history, to explain my stance on self-diagnosis. For those of us who self-diagnosis, we typically spend a great deal of time researching potential diagnoses and learning everything we can. We research and read and talk with people who share the diagnosis. We educate ourselves as much as we are able as well as doing a lot of personal reflection and analysis. Self-diagnosis is not a haphazard process by which people simply decide that they have x disorder. Rather it is typically a long and arduous process during which a person comes to a greater understanding of self and learns extensively about the diagnosis they think fits them.
On the other hand, psychiatric professionals must learn about a wide range of neurodivergencies (seriously, have you ever actually seen a copy of the DSM? It’s huge!) . As such, they are not able to learn about every diagnosis in-depth but rather must work off a cursory understanding of various disorders. This is particularly true when it comes to less common diagnoses. Most psych professionals will be fairly well versed on depression and anxiety but are likely to have only a minimal understanding of more obscure diagnoses like schizoaffective disorder or personality disorders. There isn’t enough time in the world for every psych professional to be well versed on every possible diagnosis, so it isn’t through a fault of the psych professional that they are unfamiliar with or have only a cursory knowledge of a diagnosis.
Further, most psych professionals spend minimal time with their patients. Whether it’s an hour twice a week or 15 minutes once a month, that is not enough time to be getting a full view of a person and their illness. A psychiatrist must diagnosis based off of whatever information they are able to gather in the limited time they spend with patients.
I received my official diagnosis of schizoaffective disorder from a psychiatrist who had spent one hour with me. In that time he was able to reach the same conclusion I had. Yet, two other psychiatrists, having spent far more time with me were unable to provide a diagnosis. He spent one hour diagnosing me. I spent hours and hours and hours over many weeks researching and learning before coming to a conclusion about my diagnosis.
A psychiatrist is working with a patient on a limited basis with a limited knowledge of many possible diagnoses. Psychiatrists don’t know everything about every disorder and cannot be expected to. Therefore, someone who has done adequate research on the diagnosis they think fits their symptoms, they may actually know more about this particular diagnosis than the psychiatrist they are seeing.
One of the things that baffles me about anti-self-diagnosis arguments is the argument that you don’t have x diagnosis until a professional diagnoses it. Whether or not you have a label for your symptoms, the symptoms exist long before psychiatric help is sought. Further, these symptoms fit into a diagnosis whether or not a professional has classified it as such. Someone doesn’t magically have bipolar just because a professional gave them that label, they had bipolar long before they were given the word for it.
So why is self-diagnosis useful, you may ask? You can’t get meds if you are self-diagnosed. Why not just see a professional? This is a multi-faceted question that may require a fair bit of explanation, so please bear with me. Let’s start with the ways that self-diagnosis is useful.
Self-diagnosis allows a person to learn more about themselves. It gives them language for experiences they previously thought were just weird quirks they had or personal failings. When going through the self-diagnosis process for autism, I had so many revelations of “oh! Other people do this to!” I found great comfort in learning that I’m not alone and that these odd things I do are common enough to have names. This alone can be a huge source of peace for those of us who knew we were different but thought that we were just failures or weak for not being able to do things the way everyone else does.
Further, after self-diagnosing, one is able to start interacting with others who have the same diagnosis. Not only does this provide a vital sense of community and belonging, but it also opens the door to learn new coping skills. The amazing communities that have come about on Tumblr and other sites for neurodivergent folk have provided a great place to share tips and resources. People who are newly diagnosed or self-diagnosed can turn to these communities to find coping skills and tips to help themselves lead better lives. Joining Tumblr’s autistic community has been one of the best things I’ve ever done. I learned so many coping skills that have helped me live a better life. I’ve learned, through the help of this amazing community, how to recognize sensory overload before it gets to meltdown point so that I can make changes to avoid a meltdown. I went from having daily meltdowns to one or two a week which has made a huge difference in my life. I even have times now when I’ll go weeks without having a meltdown. The skills we can learn from each other can prove invaluable towards living a better, more fulfilling life.
That’s great, you may be thinking, but why not just get a professional diagnosis if you’re so sure that you have x diagnosis? Well, dear reader, there are several reasons that someone may not want or may be unable to get a professional diagnosis. First, a diagnosis can be expensive, particularly depending on what diagnosis you are seeking. For general mental illness, it will take at least one visit to a psychiatrist which, depending on if you have insurance, can be pricy. With insurance a visit can be $5-$50, but, without insurance, that price can skyrocket to well over $100. For many that is not a cost that can be incurred. However, for a diagnosis like autism, the cost of getting a diagnosis can be several thousand dollars and is typically not covered by insurance. These financial barriers can be enough to prevent people from being able to seek a professional diagnosis.
Aside from the financial barriers to getting a diagnosis, there are other things that can stand in the way of receiving a diagnosis. The psychiatric field is filled with biases and stereotypes. For example, in recent years, there has been a wave of adult women being diagnosed with autism after their child is diagnosed. These women were never diagnosed at a younger age likely because they didn’t fit the stereotypes of autism. For those who aren’t young white boys, it can be difficult to get an autism diagnosis because the stereotype is so strongly ingrained. Women, people of color, people who fall outside the gender binary, people with other disabilities, and others who have marginalized identities can face discrimination and dismissal by the psychiatric field because we do not look like what the professionals think someone with x diagnosis should look like.
There are also just odd myths that manage to keep hold in the psychiatric industry. For instance, when I was in high school, I went through hours of psychological testing. At the end I was told that I tested positively for ADHD but that I wouldn’t be diagnosed because my grades were too high. When I told that to my current psychiatrist, she looked baffled and questioned what that had to do with anything. Had I not dealt with someone holding ableist assumptions when I was in high school, I would have been diagnosed much sooner and would have had access to treatment that could have made a huge difference for my college years. It wasn’t until years later that I self-diagnosed as having ADHD after doing extensive research which was then validated by my current psychiatrist. Even before she validated it (and prescribed me meds), I was learning tips and tricks to manage my ADHD from the brilliant communities on Tumblr. The meds have been immensely helpful and life changing, but the tips I learned before I had access to meds made my life more livable until I was able to get to a place where I could seek treatment.
Other barriers to seeking a diagnosis can be more personal. For someone who is a parent and may have to face a custody battle, an official diagnosis can be used against them as proof that they are an unfit parent. This is particularly common for those with developmental disabilities like autism or those with “scary” mental illnesses like schizophrenia or personality disorders. The stigma attached to these diagnoses can put a person’s parent status in danger not just from a custody battle but also with regards to Child Protective Services who may take away someone’s children based off the diagnosis of the parent.
Now that we’ve laid out the barriers that may prevent someone from obtaining a professional diagnosis, let’s look at the dangers involved with both professional diagnosis and self-diagnosis. People often bring up the harm of self-diagnosis without ever really extrapolating on why it’s harmful. Some say that it is harmful to those who have been professionally diagnosed, though I struggle to see how. If someone self-diagnoses and it turns out they were wrong, what harm has that really done to others? How does that affect your life? As for the person who was wrong, they may have had the wrong diagnostic label, but if they have dedicated this much time to researching what’s “wrong” with them, then it is likely that there is something going on, they were just a little off in the label. The coping skill and tools that they learned while researching and talking with others will likely still help them live a better life. I’m really trying to see how an incorrect self-diagnosis could hurt someone, but I’m really struggling to see how it could be truly damaging.
On the other hand, professionals are not always correct in their diagnosis. Professionals are people and people make mistakes. Further, a psychiatrist can only diagnosis based on what they are told and what they observe during their limited time with a patient. If a patient withholds information, the psychiatrist is likely to make an incorrect diagnosis. Even if a patient is fully open and honest, there is still a risk of misdiagnosis. However, unlike an incorrect self-diagnosis, a misdiagnosis from a professional can cause real harm. If a patient is given medication based on a misdiagnosis, the patient can suffer unnecessary side effects or dangerous reactions. For example, antidepressants work great for many people with unipolar depression. However, for those with bipolar depression, antidepressants can cause episodes of psychosis, induce mania, or cause a mixed state wherein a person is both manic and depressed at once which can lead to suicide. Therefore, it is my conclusion that there is far more risk inherent with an incorrect diagnosis from a professional than with an incorrect self-diagnosis.
Finally, I would like to address the ableism that comes into play in these debates. When arguing that only a professional can make a diagnosis, the underlying message is that only a professional can understand mental illness. Most of these professionals are neurotypical, or, if they are neurodivergent, do not share the same diagnosis they are giving. Therefore, this argument puts forth that neurotypicals know better than the people actually living with these neurodivergencies. This idea is very ableist. Unlike popular culture would lead you to believe, many neurodivergent people understand themselves very well and see the ways that their neurodivergence plays out in their lives. It is ableist to assume that someone without any firsthand experience with a diagnosis automatically knows better than the people living with that diagnosis.
In conclusion, I am a strong supporter of self-diagnosis. There are many barriers that can prevent someone from being able to seek a professional diagnosis and self-diagnosis allows people the opportunity to find resources and work with others who share the diagnosis in order to live better more fulfilling lives. Whether you are self-diagnosed and waiting to get a professional diagnosis, self-diagnosed but unable to get a diagnosis, or self-diagnosed and don’t want to get a professional diagnosis, you are valid and deserve support and a place within the community.