Do I Want a Diagnosis from My Therapist?

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Person with short hair and beard sitting on stairsIt is often assumed by the general public that psychological diagnosis is a normal part of therapy that always occurs. Some people who have been in therapy may be unaware they have received a diagnosis. For their part, therapists have a wide range of views and practices pertaining to diagnosis, ranging from seeing it as essential to seeing it as unnecessary. Consumers have a right to know the advantages and risks of diagnosis.

Advantages of Diagnosis

Some people find relief and validation in receiving a diagnosis, as it symbolizes they are not alone. This can decrease the guilt, shame, and feelings of isolation that often are experienced. Diagnosis can also open up resources. This may be true, in particular, for children who are struggling with challenges in their social, emotional, and behavioral functioning.

For professionals, diagnosis can be a good way to quickly and easily communicate information, helping them to be more informed when working with a person in treatment. Also, diagnosis is often required for insurance to pay for therapy, which is a significant financial benefit.

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Risks of Diagnosis

The risks of diagnosis are less frequently acknowledged. Most people I work with in therapy are surprised when I discuss the advantages and disadvantages of diagnosis with them; almost all who previously have been in therapy note that no therapist has done this with them before. But there are indeed risks, and consumers have a right to be aware of them.

Diagnoses often stick with people. I have had people who came to me for therapy with a previous diagnosis that followed them from childhood well into adulthood. In some cases, it was quite clear they were misdiagnosed early on, yet the label stuck with them. Diagnoses can also change over time and may no longer be accurate.

Further, diagnoses can be misunderstood by those outside the mental health profession. I have spoken with many previously diagnosed people who, upon sharing this with people they trusted, found it changed their relationship and, in some cases, ended it.

What Is Diagnosis?

What constitutes a diagnosis is debated by therapists (Kinderman, 2017). In essence, a psychological diagnosis is a label placed on a group of behaviors or experiences that are often called symptoms. The determination of what amounts to a diagnosis is determined largely by what is considered “normal” or average. There are some who maintain that diagnosis almost always has a biological origin, while others believe it tends to emerge largely from personal or social experience. Many believe it may be a combination of these two.

At times, a diagnosis can lead to focusing solely on the symptoms of that diagnosis, without considering the challenges or thought processes that may be contributing factors. This can limit the understanding of you, your concerns, and what you want from therapy.

A cluster of symptoms that fit a diagnosis may emerge from different causes. For example, depression may result from having endured difficult experiences in life or may, at times, have a biological cause. Yet, some assume that, regardless of whether there is a social/personal cause or a biological cause, the treatment of a condition should be through medication. This is a concern of many therapists who have witnessed therapy, without medications, successfully treat many conditions.

At times, a diagnosis can lead to focusing solely on the symptoms of that diagnosis, without considering the challenges or thought processes that may be contributing factors. This can limit the understanding of you, your concerns, and what you want from therapy.

After the release of the most recent edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) in 2013, many therapists were upset with the changes (Kinderman, 2017; Robins, Kamens, & Elkins, 2017). These changes included a general lowering of the threshold of the criteria to give people certain diagnoses. Some therapists voiced concern that this could lead to medicating people who do not need medication.

In the end, psychological diagnosis is based in part on science, in part on theory, and in part on the politics of the field of psychology. There is much that remains unknown and much that is hotly debated. I generally urge caution when any mental health professional is married to any one perspective on diagnosis and does not acknowledge other views.

Consumer Rights with Diagnosis

I believe that, in most instances, consumers should be part of the decision about whether to be given a diagnosis. It is not something that should be imposed upon the consumer without their input or perspective. Here are my recommendations for consumers regarding diagnosis:

  • If your therapist does not bring up diagnosis in the first session, ask if they are going to give you a diagnosis and what the diagnosis is.
  • Ask what the diagnosis means and your therapist’s reason for giving you the diagnosis.
  • If you do not want to be diagnosed, tell the therapist. They may be required to give a diagnosis if you are using insurance; however, you have a right to be a part of that discussion.
  • You have a right to ask how the therapist will use the diagnosis.
  • If you believe your therapist is treating you like a diagnosis and not like a person, discuss this with them.
  • Ask your therapist how your diagnosis may impact you.
  • If you are not comfortable with your therapist’s approach to diagnosis or the diagnosis they give, get a second opinion or consider finding a different therapist who may be a better fit for you.

Diagnosis can be a difficult issue for therapists and consumers alike. It is best approached as a collaborative process within the therapeutic relationship. Regardless, you have a right to know what is going on with your diagnosis.

References:

  1. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th). Washington, DC: Author.
  2. Kinderman, P., Allsopp, K., & Cooke, A. (2017). Responses to the publication of the American Psychiatric Association’s DSM-5. Journal of Humanistic Psychology, 57, 625-649.
  3. Robbins, B. D., Kamens, S. R., & Elkins, D. N. (2017). DSM-5 reform efforts by the Society for Humanistic Psychology. Journal of Humanistic Psychology, 57, 602-624.

© Copyright 2018 GoodTherapy.org. All rights reserved. Permission to publish granted by Louis Hoffman, PhD, GoodTherapy.org Topic Expert

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by GoodTherapy.org. Questions or concerns about the preceding article can be directed to the author or posted as a comment below.

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  • Violet

    February 22nd, 2018 at 11:42 AM

    I was diagnosed with bpd (borderline personality disorder) about two years ago. I am very glad to have my diagnosis, and I don’t care how it follows me or that people with bpd are stigmatized. It was so frustrating and difficult to not know what was wrong with me, to not have any answers, to just feel horrible and like I continued to spiral out and have emotional rages for no reason. I was fine for periods but then other periods were miserable and sad and low and I couldn’t shake those feelings off. So having a diagnosis really helped me, because I could begin to work on what I need to work on, and I began to get better. This isn’t the answer for everyone, of course, but there are many benefits of diagnosis.

    Reply

  • Sirine

    March 30th, 2018 at 4:21 PM

    Absolutely agree with you. Clients deserve to know. Yes, disorders and syndromes and symptomologies overlap… Yes, people move in and out of diagnoses as their lives change, progress, and pass through developmental stages… Yes, certain stressors can activate symptoms and behaviors not seen before… So what??

    Medical doctors can no longer ethically withhold medical diagnoses from alert and oriented adult patients who sign their own consents and make their own treatment decisions. In every hospital, ER, and doctor’s office, you see posted a list of patients’ rights and responsibilities (or you should). In seeking (or struggling to get) a diagnosis (not that easy for fibromyalgia, lupus, or PCOS, for example), patients often become aware of how inexact a science medicine actually is. Ironically, they don’t trust it or their doctors less as a result — they just get more active and proactive in their own care. That’s a good thing!

    Therapists should not be able to withhold diagnoses either. They don’t have to put it in the notes sent to the insurance company; they don’t have to write it in their notes; they don’t have to focus on it, hammering away at the symptoms of the diagnosis in every session.

    But the client has a right to know — and, as with medical diagnoses, finding out their diagnosis will ultimately be far more beneficial than it is harmful for the vast majority of clients. To withhold a mental health diagnoses smacks of the hypocrisies of Victorian Austria, to me.

    Reply

  • Sirine

    March 30th, 2018 at 4:01 PM

    I am feeling very sad and angry at the lack of diagnosis from multiple previous therapists over the past 30 years, despite my frequent questions (“What’s wrong with me? Why can’t I do this stuff others do so easily? Why am I so damned sensitive? Why do my moods swing down on a dime? Why can’t I remember huge chunks of my life?”) — and the recent discovery that my diagnoses include not only the major depression I already knew about, but also BDP, C-PTSD, and that the large blank chunks in my memory are the result of dissociation.
    I only just learned this in the last six months with my current therapist of just over 1 year, N—. And he didn’t tell me, either — I had to ask. Fortunately, he opted not to evade the question the second time I asked.

    I have suffered from major depression (the psychiatric diagnosis) since childhood; I finally got medication at age 20 after I promised the psychiatrist that I would stop self-medicating with liquor and drugs. My childhood/family was marked by physical, verbal, and emotional abuse of myself, my siblings, and my mother by our very sick father, who had to be removed from the house by the police when my parents separated, and from whom my mother required an order of protection. My younger sister tried to kill herself; I almost flunked out of high school at the time, and I did fail out of college on my first attempt; my 3 older siblings fled the house as soon as they could (one older sister tried to kill herself). My maternal grandfather, a great uncle on that side, and a second cousin all committed suicide by shotgun. None of the 5 of us escaped the mental illness we inherited as well as grew up with; we got the nature *and* the nurture (or lack thereof). Of us 5 adult kids, 4 of us are on anti-depressants &/or anti-anxiety meds (and the other one should be, but is so anxious about side effects, she won’t take them…).

    I say all this as a preamble because along with psychiatric care for the last 30 years, I have seen therapists off and on for the same time — longer, in fact. There were times over the decades when I didn’t have the money for therapy, or I couldn’t continue with a particular therapist because I moved away from the area, they left the practice, or an insurance change took them “out of network” and I couldn’t afford to pay out of pocket. But I always returned to it because my depression — I thought — always returned…
    In reality, I now think that my personality disorder kept recurring, and I had learned no successful techniques for handling it in all those decades of therapy.
    I spent 13 years in therapy with the same therapist from age 16 until age 29. Other than the psychiatric diagnosis of major depression, my therapist L— of 13 years never told me of any other diagnosis despite me asking many, many times. The psychiatrist, before putting me on ADs, had told me to go to my university medical library (I had returned to college after failing out on the first attempt 2 years earlier) and read a few books on the psychopharmacology of depression because I was bright and should study up on the medications I would be taking. I dutifully did as he said and when I saw him again, I said, Okay, I read these 5 books on the psychopharmacology of depression, and I still want to take medication – I think I know what to look for in terms of side effects/adverse effects. He agreed after some brief discussion and quizzing of me, and put me on a tricyclic. After a miserably depressed 8 weeks of waiting, it finally kicked in and for the very first time ever since I could *remember*, my depression lifted. I began functioning much better, doing well in school (performing to my ability, which I hadn’t done since approximately age 12), developing healthy friends and relationships (rather than with delinquents), and being more outgoing (without feeling the need for alcohol or pot that I had required due to painful shyness and social anxiety prior to getting on ADs). I made a huge leap forward in terms of progress in therapy after starting the antidepressants, after a few years of just spinning my wheels.
    But I still retained core behaviors which, under stress, would recur and whose traits never left. Therapy never seemed to eliminate them, only to temporarily reduce them. Now I know why, but I didn’t, then; I continued to read up on the psychopharmacology of depression and mood disorders over the next couple decades because of my personal interest and wanting to stay up to date on new drugs and new research in psychopharmacology and neuropsychiatry.
    Contrast that with the therapist I had for 13 years at the same center, who only agreed with the Axis I diagnosis (depression). Though she knew of the large missing blocks of memory from my life (which started in childhood well before I ever tried drugs), and over 13 years she became well aware of my desperate desire for and then sudden rejection of boyfriends I thought had “turned against me” due to infidelity/other betrayal (and my paranoid ideation when such fears proved true), at no point seeing her did she tell me that I met criteria for any other Axis II or Cluster diagnosis. She knew the psych MD had expected me to read up on the psychopharmacology of depression before putting me on ADs, she knew I continued to read up on depression as much and as often as possible to expand my arsenal for dealing with it. (Which came to include amino acids, Vitamin B complex supplements, minerals like magnesium, and other modalities like exercise and light boxes in the winter).

    We had a fruitful relationship, I thought — at least, my life circumstances improved over those 13 years as I worked through my many layers of defense, fear, pain, rage, and sad abandonment issues from the abuse at home. When I “graduated” from therapy with her at 29, she gave me a small gift and said I didn’t need her any more, that I had come so very, very far.

    Life being the way it is, and my resiliency not being the best, although I continued taking antidepressants, I did have to seek counseling a few more times when hopelessness, helplessness, and depression worsened because I lost a job, lost a lover, sick parents required my care, sick parents passed away, or my meds plain stopped working. (In 30 years I’ve been on 9 of them. My receptors seem to habituate quickly to ADs, sigh).
    After a layoff and return to school for a new career, as well as meeting the man I would be with for the next ten years, I went back into therapy, afraid I would screw up both my new relationship and fledgling career change because of my fragility, recurrent depression, and fears of/longing for intimacy. Years on, when my new career was really stressful, I sought another therapist from the employer’s EAP program.
    I turned 50 a few months ago. I’ve been alone for 4 years since the demise of my 10 year relationship with my ex. 50 was a hard birthday, and in the 2-3 years leading up to it, I developed worsening physical health problems (perimenopausal hormone changes caused or aggravated bone spurs, degenerative joint disease, a terrible flair-up of fibromyalgia diagnosed a decade before, and new carpal tunnel and epicondylitis). Growing depression blossomed again as my latest AD stopped working. I had been working with a therapist from an EAP referral for a few years, but felt I wasn’t getting anywhere with her. (She also never gave me any answer to questions of diagnosis, though to be fair, by the time I had her for a therapist, I had basically given up asking, sick of the standard evasions “Why does that concern you?” or “Perhaps we should explore what not knowing means to you” etc.) The two male therapists I’d seen during my years of returning to school for a new career (I didn’t change therapists; one left the practice and handed me off to the other) had also dodged the questions too, with the typical aforementioned evasions.
    I am now seeing a therapist who I’ve been with for a bit over a year, whom I also found via my (different) employer’s EAP program when my mood dipped again, my functioning sunk to new lows, and I only left the house to go to work. I had found the psychiatrist I really liked from about 10 years ago (he had also left the practice I was at back then), he changed my meds last May, after which I slowly started to improve again.
    Over the course of the last year my experience with the current therapist has resulted in being both very gratified by his care but also greatly disillusioned with standard psychotherapy. I knew from the moment we began my intake assessment that I could work with him, that transference would definitely occur for me and a number of issues which had recurred in my life could be worked on with him. I was also severely depressed. In the beginning, he largely listened, more or less the talk psychotherapy I had with all previous therapists. But when my functioning was very, very low, he assigned some CBT tasks. I had participated in a CBT group for social anxiety in my 30s and hadn’t found it particularly helpful, but I agreed to try the techniques again when N— asked me to. In the course of working on them, I realized the handouts he gave me were not strictly CBT. I Googled the book title at the bottom of one page and discovered the DBT workbook. Not knowing what DBT was, I Googled that, too. In all these decades, you see, my focus had been on the psychopharmacology of depression — from a medical or neurochemical standpoint — because that was the *only* diagnosis I had ever been given. Consequently I had done little research on therapy or therapeutic techniques, because therapy just seemed to be talking, so I had only read up on standard talk psychotherapy and the occasional “Road Less Traveled” type book. Since I made relatively little progress in therapy until I got on ADs — after which I made a ton of progress very quickly — my main focus in my reading was the one diagnosis I’d been given, and more or less venting while talking to my various therapists.
    Happy to have discovered DBT (which I now know has been around since the 90s!), I eagerly read up on it.
    And realized DBT was aimed largely at Borderline Personality Disorder.
    Then I looked up the diagnostic criteria for BPD…
    …and found myself.
    Then I discovered the reason for missing huge chunks of memory from my life (about which I had asked EVERY single therapist I’ve ever had!): dissociation.

    The next time I saw N— and he gave me another xeroxed DBT handout, I glanced at it, looked up at him, and said, “These are for borderline personality disorder.”
    He averted his gaze a moment, then met my eyes again and said, “Yes, but they’re useful for many issues.”
    A week later, I mustered the nerve to actually *ask* him if I had BPD. It took me until the end of our session to work up to it. I showed him that I carried in my purse our distress tolerance handout from the week before, took a deep breath, and finally asked, “So… I have borderline personality disorder, huh?”
    He paused for a long moment; I could tell he was weighing telling the truth against lying by omission (probably with a typical statement I’ve heard a zillion times, eg “Why does that concern you so much?” or “You seem focused on that; can you tell me why?”).

    To his VERY great credit, he nodded slowly and said gently, “Well… you do meet most of the diagnostic criteria.” I hesitated a moment and I said, “No, I basically meet ALL of the diagnostic criteria.” He paused again and then nodded.
    I went home in a state of numb shock about my preceding decades of therapy and the total lack of information despite my asking every single therapist multiple times what was wrong with me, why I couldn’t remember chunks of my life, why my moods turned on a dime, why I got paranoid when I super stressed. Why didn’t they tell me when I asked those questions? Why did I get evasions instead?
    Had I known, had I been INFORMED, decades earlier, that I was BPD, I could have done what I did with my major depression diagnosis: read up on it; stay current on it; likely discover DBT decades before, rather than only now at the age of 50 when it’s been in use for over 25 years.
    I could have been working far more successfully on my personality problems for DECADES now (I have made more progress with N— in one year than I had in three years with my previous therapist) and LONG AGO learned the strategies to interrupt my downwardly spiraling thoughts, my rapid mood swings based on a casual statement/phone call/text message, and the paranoia of everyone else that returns under severe stress. I could have been an informed consumer of therapy; I would have been more proactive, as I was all these decades with my depression, my AD meds, and my psychiatrists.
    When I looked up the BDP diagnostic criteria and read *myself* in them, the BDP diagnosis hit me like a ton of bricks. But that only lasted for a few days. I now regard the BDP diagnosis as a bittersweet blessing. One the one hand, I hated discovering it because the only other person I’d been told was BDP was my abusive father (who my very first therapist told me was “a very sick man”).
    On the other hand, I have learned so much about BDP, C-PTSD (from both on-the-job trauma and the traumas of childhood in an abusive home with an abusive father), and the cognitive and neural dysfunctions associated with both in the last several months. I have a *name* for the blocks of blank space in my memories of childhood and adolescence (and even adult moments of crisis): I know it’s dissociation, that *I* dissociate. I have a *name* for the way that a lover goes from perfect to evil in my mind with the slightest evidence of betrayal or hint of infidelity (BDP). I have a *name* for the flashbacks of abuse and assault I suffer, the intrusive thoughts and the sick dreams (C-PTSD).

    All of this just makes me ache for the confused and sometimes desperate 20-something and 30-something I once was. If she’d only known, she would have have sought DBT and EMDR over 20+ years ago — had her therapists only been HONEST with her…
    …instead of only discovering DBT for BPD at age 50.
    The loss of time — *decades* of my *LIFE* — to persistent characteristics related to a personality disorder I didn’t know I had, and which likely was the reason patterns repeated over and over in my intimate relationships — is heartbreaking. I asked so many, MANY times, of every therapist I’ve had, “What is wrong with me? Why can’t I do this stuff? Why can’t I remember huge chunks of my childhood and teen years?” and no one, not once, ever mentioned BDP or dissociation/PTSD/trauma.
    Since the only diagnosis I’d ever been given was “major depression,” I thought all my pathology was a result of *depression*. Had I known the *other* diagnoses, I could have worked far more effectively on those starting 20+ years ago when I was younger, had better health and more energy — and had more decades ahead of me than behind me, as I do now.

    When your clients ask you “What is my diagnosis?” and “What is wrong with me?” and “Why can’t I do this stuff other people do so easily?” and “Why does this always come back/Why do I do the same thing over and over?”, I firmly believe you should tell them their diagnosis. Obviously, you shouldn’t just declaratively say “Your problem is you are xxx” — that style of therapy would be paternalistic and unhelpful, anyway, let alone “labeling” them. But when a client asks, *you* *should* *answer* and you should answer *truthfully*.
    Because they might want to start working on their PD in their 20s or 30s instead of only just finding out about it at age fucking 50.
    Medicine used to routinely *not* tell patients about their cancer diagnoses… back in the 1950s and 60s. But guess what? We figured out that that was harmful and paternalistic and we now know that it is unethical NOT to tell a patient about their cancer diagnosis.
    Why isn’t it the same in psychology/therapy?
    Why??

    Reply

  • Raene Rae R.

    April 10th, 2019 at 6:36 PM

    Love to you. Same prob… EFT only thing I’ve found cuz lije your sis… Too afraid of side effects. I have 4 kids at home

    Reply

  • George

    October 30th, 2018 at 6:52 AM

    I’m troubled by your continued use of the word consumer to describe a patient. I think it’s an important distinction.

    Reply

  • TH

    January 27th, 2019 at 6:44 AM

    I know I am only a consumer, but it is also a painful way for me to look at it. . As much as I want the therapist to be my partner battling my disease , I think the therapists feel there is an important benefit to a power inequality in therapy. I have read of the importance of a blank slate, introduced bias, transference, and various other reasons for the therapeutic distance between the therapist and patient.
    Maybe it is also a defense mechanism for the therapist, allowing them to go home at the end of the day without taking home the pain that is thrown at them throughout the day. I know it is selfish of me, but I want someone who will share my pain.

    Reply

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