Why my diagnosis took decades
And how you can avoid some of my mistakes
If I’m being totally honest, I opened the book with low expectations.
The author, Dr Thomas Insel, is a leader in the field and quite well-respected, but that wasn’t enough for me. I have a natural distrust in the system that failed me for decades. And since Dr Insel was the Director of the National Institute of Mental Health (NIMH) from 2002-2015, he represented that system.
I didn’t think his book would have much to tell me. I was wrong. In this newsletter, I will share some of Insel’s most clear-eyed, honest insights that can help you, too.
Not enough therapists? Not true.
I am lucky enough to get to spend some of my time working with nonprofits in the mental health space. I always want to know, “Why is the path to diagnosis and treatment so difficult?” I often hear that it’s because we don’t have enough therapists in the system. As Dr Insel shares, that is not the case:
Although I frequently hear that we don’t have enough mental health providers, the numbers don’t reveal a shortage. We have nearly 700,000 mental health providers in the United States, more than half being in the traditional psychotherapy professions of social worker, marriage or family therapist, or licensed counselor. (Compare the number to the 209,000 physical therapists or 200,000 dental hygienists.)
So why is it hard to find mental health care that works?
The uneven distribution is one reason — there are profound differences in access between rural and urban regions, low-income and high-income neighborhoods.
I’ve often heard that what industry people call “telecare” — and the rest of us call Zoom calls — are helping to address the access issue issue. Many of the restrictions on remote therapy were loosened during COVID. A barrage of new startups and early stage companies are attempting to connect people who can afford it with therapists. This should be good, right? More people connecting with help that helps? Not so fast, says Dr Insel.
Beyond access, there are three major barriers [to finding qualified care]. First, the available therapy workforce often has not been trained in treatments that work. For problems like anorexia-nervosa or obsessive-compulsive disorder, for which specific psychological therapies have been proven to be effective, there may only be a few hundred trained therapists across the country.
This is where Dr Insel really won me over. It’s not a matter of any person being connected to any therapist. It’s a matter of connecting with the right therapist trained in evidence-based strategies addressing the issues you face.
Second, care is highly fragmented (e.g. mental health and substance abuse care are rarely coordinated with the rest of health care).
As someone who did not know what was wrong with me, I was often asked to connect the dots for my heathcare providers so that they could properly treat me. I felt like a failure at that, which, in turn, made me feel like I would never get the help I needed.
Finally, there is little accountability because mental health providers rarely measure outcomes.
Preach.
We don’t all need psychodynamic psychotherapy.
The majority of mental health professionals are not trained to provide treatments that are scientifically proven. Few programs require supervised training for any scientifically based therapy, but more expose students to psychodynamic psychotherapy, which explores early conflicts.
If I look back at my experience as an overthinker, this is where the real problem lay. I developed extremely tough coping techniques throughout the course of my life and never knew I had an anxiety disorder. I knew something was wrong, though, and I went to see five therapists throughout my 20s and 30s. I talked a lot about my childhood.
That talk never seemed to help. In fact, it seemed to only confuse my therapists. Why couldn’t they figure out what was wrong with me by talking about my family? At one point in my early 30s my husband said, “Can you ask your therapist about anxiety? Could it be that?”
My therapist’s response was “You don’t have any more anxiety than anyone else.” I will never forget that! I believe it was the strong focus on psychodynamic psychotherapy that blinded this person to what was really going on.
In other words, most people who teach psychotherapy deliver what they learned in training. For many, this was determined not by scientific evidence but by what worked for a few charismatic clinicians.
Here’s the hard thing: all of this is such a learning curve. It starts by simply trying to find out what is wrong with you. If you don’t have a diagnosis, you can’t find the right therapist. And the system, as it stands, will likely land you in psychodynamic psychotherapy for the reasons Dr Insel describes above. For my fellow overthinkers, that might not be the best fit (it wasn’t for me).
In summary, the burden is on the patient.
Not ideal, but it is reality. My advice to anyone reading this is to not give up hope. I was a week from turning 40 and I wanted to cancel my neurologist appointment. “What’s the point? I never learn anything new. It never helps.” That was the day I got my diagnosis and everything changed. It can for you, too.
I learned that despite what TV shows tell us, there are other approaches beyond psychodynamic psychotherapy. There is cognitive behavioral therapy, acceptance and commitment therapy, dialectical behavior therapy, exposure therapy, eye movement and desensitization therapy, and in growing popularity, psychedelic therapy. Unsure of where to start for anxiety? Check out this fantastic blog post from Amanda Stern.
Stay curious, stay open, and don’t mistrust Dr Insel just because you think he represents a flawed industry. You may be surprised by what you learn.
I would agree with this, both as a prior patient myself, and as a psychiatrist and therapist for 45 years. Not only does one size not fit all, many diagnoses are truly hidden even from the most observant therapist.
My own eye-opening experience was finding adult ADHD in women in the 20s and. 30s that had never been previously diagnosed. https://medium.com/@ed.schwartzreich/previously-undiagnosed-add-in-women-a-small-tale-of-discovery-55691549e4bf
Since I was both an eclectic therapist and a medication provider, I would work with my patients to discover their diagnoses. Sometimes we would agree to a trial of medication(s); other times I would make a referral to co-workers specializing in trauma, alcohol use disorders, whatever, who were more competent in those areas than I was. Or we would agree to sit there and try to find out what was going on.
The key point was empathy. If a patient said “Doc, I think you may have it wrong” - I would listen. Intently. I had training in CBT as well as psychodynamic therapy, also did groups, marital therapy, saw some kids. But one had always to meet the patient where she was at. I don’t know from what you wrote exactly how your anxiety disorder had been hidden from you (and others), but someone, or something helped you discover that diagnosis. The field is really still new, even after over 100 years.
Should probably also say hi! I'm a nonbinary human who was raised and socialized female who didn't realize they (rounded first, skipped second, and stealing third!) had ADHD until much much MUCH much later in their five-and-counting long decades of life.