First, let me start by saying that I am pro-science, pro-healthcare, and pro-getting support from professionals. My observations and thoughts here are not contrary to those beliefs. If anything, I believe they give more room for these beliefs to breathe and have life.
Ok, now that I have that out of the way, let’s get into it.
I have worked with countless individuals during my 20-plus year career as a therapist and one phenomenon I frequently encounter is the client’s search for a diagnosis. This search might be for a diagnosis of a mental or physical health condition. It might be for themselves or for someone they love. The desperate pursuit of the label comes out of chronic stress, misery and pain. The diagnosis is a key to an unlocked door through which they believe they will find healing and new life.
I am not anti-diagnosis. Diagnoses have merit and direct a pathway for treatment.
I am less certain of any magical powers a diagnosis holds.
I have watched individuals get a diagnosis and then experience the inevitable frustration of not getting the instant relief they expected would come with the certainty of the verdict.
Yes, some diagnoses have obvious pathways to resolution. You get a positive strep test. You take a round of antibiotics. You feel better in less than 24 hours. The nuances of a cancer diagnosis connect the individual to specialists and treatment protocols that are continuously being refined and perfected by research.
But, most pathways to healing are more elusive.
Medicine IS an art more than a science, and doctors (and therapists) are NOT gods.
Healthcare is part of our greater capitalistic society where profit is god and patients are consumers.
We watch movies and television shows that give us the happy endings of a diagnosis with a clear path and outcome. We read memoirs of people who received a diagnosis and went on to have a wildly successful life. These memoirs sell for a reason. They are profiting off of hope.
I imagine that you might be saying right about now: “Wow, Emily, you are one dis-illusioned B****.” Haha, you might be right. But, more than disillusionment, I feel deep compassion as I write this.
I feel compassion for each of us that goes to the prescriber, the provider, and the expert, expecting to purchase a product, only to realize later that the product (healing, resolution) was oversold and underperforms.
We then realize that the system is not going to save us. No one is showing up magically to take care of us. We have a role in self advocacy and self-care. We learn through disheartening experience that the journey towards health is just that: a journey, with meandering paths and forks in the road. We discover that the providers are also cogs in a system of profit, and pressured to keep a tight schedule, spending less than 15 minutes with each customer patient so that more billable hours are possible in each day. They…the providers… are often burned out, feel undervalued, and frustrated by their own powerlessness to offer the attentive care they know that each individual deserves not to mention any time leftover to continue to learn, grow and keep up with the latest in research in their field.
Fast food, fast fashion and amazon culture has trained us to expect the same product with every purchase. I pay you and the insurance company money. Your expertise gives me a package.
Unfortunately…or fortunately…healthcare journeys are not so easily commodified.
We have been trained to look outside of ourselves for the answers: to look for a product…a person, a method, a pill… to take care of us. Consumerism has created a culture of learned helplessness in which the individual is conditioned immediately to look to where they can spend money in exchange for being treated and taken care of.
You, expert. Me, at mercy of you.
Most therapists have a love/hate relationship with diagnosis. It is helpful for a variety of reasons. We use something called the DSM…the Diagnostic Statistical Manual for Mental Health Disorders…to make a diagnosis. This manual is used by therapists, psychologists, psychiatrists and other providers to guide treatment. The DSM is under continuous review and updated every few years by the American Psychiatric Association.
There are disorders that were in the DSM years ago that are no longer listed. Likewise, there are disorders included that were not recognized previously. Disorders get new names and different criteria with each new edition of the manual. The field and its research discovers, learns, and changes. That process is normal and to be expected.
It would be dishonest to pretend, however, that politics and culture do not play a role in these changes.
The DSM is a vehicle of legitimization. For example, a widely used “diagnosis” in current practice is C-PTSD: Chronic Post Traumatic Stress Disorder. You can do a search for this term and find countless articles on how it affects individuals and relationships. Many have found the term helpful in their healing journey. However, it is not listed in the DSM (yet).
Therefore, it is looked upon by some in the field with suspicion. It is not a “legitimate” diagnosis because it is not in the DSM.
The DSM and its diagnoses hold power. To have a diagnosis makes a person feel legitimate. The DSM legitimizes your experience and struggles. Think about that for a minute.
You, expert. Me, must be told by you who I am. Without your label, I am not valid.
DSM diagnoses are helpful in that they give us standardized language across the field. If I am talking to a clinician in Florida about a client that just moved there and I say: “He was diagnosed with Bipolar 1,” that clinician and I both have an understanding of what that means based on our knowledge of the DSM criteria for a Bipolar 1 diagnosis.
DSM diagnoses do offer a path of treatment based on current standards in the field. For example, if someone has been diagnosed with Borderline Personality Disorder, most clinicians will know that one of the best approaches for support is for the client to participate in Dialectical Behavioral Therapy.
Even with certain accepted “best practices” there is a slightly different thought process for approach with each and every clinician.
Then there are the stories where a person was diagnosed with one disorder only to have a different clinician (or the same one!) determine a few years later that this diagnosis is incorrect and another one is a better fit.
These stories do not just happen in the field of mental health. They also happen in other parts of healthcare, too.
When a client is exhausting themselves and beating their head against the walls of the healthcare system, I will sometimes ask gently: “What gifts will a diagnosis bring to you?”
What people often are wanting with a diagnosis is to be seen, heard, and acknowledged. Diagnosis legitimizes and validates their condition and experience. Sure, they have had the symptoms for years, but now that a professional uses a code recognized by an insurance company the person can confidently say: “I have or I am _____.” Perhaps people in their life will be more empathetic and caring now that their experience has been legitimized.
Maybe the SYSTEM will show up and offer more care. Maybe we will discover that there is help and support within our community that we have not accessed yet.
Maybe we will feel less ALONE.
Sometimes the person’s response is filled with desperate hope that the diagnosis will bring answers. I know from walking with people through this process that after the honeymoon period of receiving a diagnosis, there are usually more questions. “I thought someone would know what to do now. I can’t find treatment or help that is right for me. I still feel alone in this.”
The person has an idea that with the diagnosis, an expert will have just the right treatment to fix their life.
The scramble to keep the economic systems afloat (driven in large part by the insurance-driven framework we all try to use to be healthy) drives each professional provider and patient to run like crazy to keep up. In all of that running, there is so little energy left over for community care: for the slowness and spaciousness needed to turn towards one another and be WITH…to hold space and walk alongside of…one another.
I can’t tell you how many times I have heard a client share about their many doctor appointments that result in a referral to another doctor that ends in a referral to another doctor. It sounds like a game of hot potato to me, where each overwhelmed provider assesses, isn’t sure what to do, and then pitches the condition to another expert. It is an ongoing experience of “hurry up and wait”.
“YES”, my clients agree.
We run and run and run.
Refer, refer, refer.
Next patient, next patient, next patient.
Next appointment, next appointment, next appointment.
Run harder and harder and harder.
Be better and better and better.
More patients, more patients, more patients.
Succeed. Succeed. Succeed.
Win. Win. Win.
Running, more patients, going harder= success and winning = making more money.
I am both a patient and provider. I have worked within a larger agency and sat at tables where profit is being discussed. I have heard the emphasis and the push to finagle a schedule that has a provider (such as a therapist or a physician) trying to squeeze in as many billable hours as possible into the day. Yes, to provide care. But, most importantly to increase revenue. Of course, revenue is linked to the ability to continue to provide care, to keep the doors of the agency open. Profit, in theory, ultimately helps provide ongoing and better care for patients.
In theory.
Somehow profit overshadows this intent in the long run.
A recent controversial topic in mental health is self-diagnosis. Individuals are self-diagnosing as having any number of disorders based on what they read online and the criteria that they can access through the DSM.
To be sure, there ARE risks involved in self-diagnosis. Professionals have years and years of training and experience with these disorders. Diagnoses can be tricky to differentiate. Are the rapid thoughts a symptom of ADHD, anxiety or a manic episode from Bipolar? Is it depression? If so, has bloodwork been done to assess vitamin and mineral deficiencies, thyroid function, and hormone imbalances that can contribute to symptoms of depression?
Teenagers, who are prone to “black and white thinking” and are hugely influenced by peers and culture, might find themselves believing they have a diagnosis after watching hundreds of videos reviewing symptoms that may or may not be consistent with the criteria for that label.
Self-diagnosis and stepping outside of the care of highly trained professionals puts a person at risk of falling prey to another system of profit: the business of alternative medicine. There is much that is good in alternative medicine. And, just like traditional healthcare, there are providers that are better, more skilled, and more honest than others.
Also. I am curious about the idea of self-diagnosis in the face of a system that requires months of waiting and thousands of dollars to get a diagnosis. If you have insurance and are able to find a provider in-network who does assessments (a rarity, a unicorn) then it usually takes months to get in for an appointment. If you do not use insurance, then you can expect to pay up to a few thousand dollars for an assessment that will give you that coveted diagnosis.
Not everyone can afford the time, resources, or energy needed as payment for a diagnosis. In these situations, the diagnosis IS a product. And, not everyone can afford what is being sold.
So, in some ways, self-diagnosis becomes an act of resistance to this system. Self-diagnosis takes back power from the system…from the idea that there is an expert that knows better than you.
Health and healing is a journey that requires our own participation and self-advocacy. We are not passive receivers of goods. Healthcare is not an amazon package delivered to our door with little effort from us other than scouring the internet for reviews and a click of a button.
So, yes. Maybe I am a disillusioned B****. Haha.
I am also wanting to remind people that they are human beings existing in systems that do not always treat them as if they are human.
I am a provider and a patient. I have spent years wading through and working with many providers for my own healthcare journey. None of them have been miracle workers. I have liked some more than others. A few have been amazing. A few have been apathetic and borderline neglectful. Just in the last year, I have found a sweet spot of daily care that leaves me feeling my best. It did not happen through one miracle-maker provider. It happened through a journey of assembling the regimen through my own efforts, at bringing together the input of a few experts alongside of my own initiative, trial and error. I take a daily regimen that is a combination of prescription drugs (“traditional” medicine) and supplements (“alternative” medicine) to treat a few chronic conditions. I have learned that certain kinds of movement and physical exercise are vital. Sleep is paramount to my wellbeing. Time alone, writing, and other creative spaces keep me healthy. Good, safe, loving, supportive relationships matter more than I can ever express. Enjoying food that I love and that makes me feel good is a must. Figuring out boundaries with my career is never perfect, but a work in progress.
This season of life feels good and hopeful. I know that life has ups and downs. I have ongoing struggles in my personal life. Right now, I feel more resilient and able to tolerate the discomfort of these challenges. I am enjoying the goodness of this season as long as it is here, knowing that it is a season.
I am incredibly privileged to be in this place in my life.
As a provider and a patient, I want to encourage you to remember two things:
Every provider you work with…traditional medicine, alternative medicine…every supplement company, every holistic approach… each and every one is trying to make a buck. I don’t say that with ill intent. Every individual and company is trying to survive in a world that requires making a dollar. Every individual and company is trying to make it in a world that tells them what “making it” looks like in terms of success and self-worth.
Every expert is worthy of compensation for their expertise. Their time, attention, years of training…it all has value that goes beyond a capitalistic society. Our providers are important parts of our communities. They deserve respect and appropriate pay.
Approach each interaction with providers with these two pieces of information in mind. This person, company or practice is a professional who, ultimately, is operating within a system where the ultimate goal is to make money. My care is not the first priority. It is ONE priority, but not the only priority. The experts working within this system deserve my respect and compensation in line with their value.
Keeping these pieces of information in mind will keep you in the driver seat of your care. You are, to an extent, in charge of your health journey. You get to invite certain people, treatments, and support along for that journey. You get to think critically about what is being offered to you, remembering that you have choices, and acknowledge how the system of profit affects the people and institutions you invite on that journey.
I say all of this knowing that there are many people in which these words do NOT ring true. You are hitting walls after walls of resistance as you try to find time off of work to answer phone calls, attend appointments, and find providers in your insurance network who can see you in a timely manner and bring the expertise and care you need. So many of you are discouraged, sick and exhausted from trying to find the support and resources you need to NOT be discouraged, sick and exhausted. Many things add bricks to the walls you are hitting. Being a woman, being a person of color, and poor just to name a few, are well documented human experiences that decrease the chances of getting timely, thorough, adequate care.
As a provider and a patient, I want so many things for you and for me.
I want for you and for me good things like supportive relationships, friendships, and a culture of community care that we all work to create. Good things like time for walks and creativity and long, deep breathing. Good things like access to good food and time to prepare it. Good things like highly-trained professionals who have the time and space to offer their expertise to each individual. Good things like highly-trained professionals who have space and time to work together, to communicate in order to provide the best, comprehensive care possible.
Maybe instead of being disillusioned, I am actually hopeful and a bit of an idealist. I believe in humanity and its ability to love and care well.
I am not disillusioned with humanity. I do not lack hope in humanity.
I lack hope (and have disillusionment) with a system fueled by economic gain and labels…a system we have given a great deal of power to.
Postscript: In the readable version of this post on Substack you will find helpful links throughout the transcript of what is heard on the audio podcast version. The podcast and Substack is called Letters from a Therapist.
That’s what I have to say today. I am guessing you have something to say, too. Happy to hear it.
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