Hello and WELCOME to PsychAssist. This weeks guest article is from Rowan Wild who shares her experiences of “diagnosis shaming” from professionals. Rowan really goes deep on how something as simple as communication can have such a long term impact on service users. This is an article that should be read by EVERYONE within the mental health sector and should a lesson for all future professionals on the importance of their role! We hope you enjoy this article as much as we did!
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For the last ten years, I have lived knowing that I have a mental illness. Living with an invisible illness has meant I experience stigma from all corners of life. From friends and family. From teachers and bullies. People who don’t understand. However, the last place I thought I’d be discriminated against was in therapy, by the mental health professionals who were paid to support me.
Three years ago, I was referred to my local community mental health team (CMHT.) This is known as a “secondary care service.” This is where you’re referred to if you need more long-term care than “primary care services” (counselling) offer, which typically offers 6-8 sessions. Sometimes your GP might refer you straight to secondary care services, but not as often.
During my time with the CMHT, I was thrown into treatment with no explanation of what they were actually treating. They were talking about me buying a workbook for dialectical behaviour therapy and attending weekly group therapy sessions. Were they not taking my social anxiety seriously at all? I could barely speak to my community psychiatric nurse (CPN) one to one, let alone to a group of strangers.
My GP had put me on antidepressants, so I took a wild guess they thought I had depression, although it was never formally diagnosed. I have never understood how you can medicate someone without a diagnosis. How can you give a person therapy without naming the issue you need to resolve?
So, naturally, I decided to ask my CPN what they were treating me for.
My memory of her response is hazy, but I do remember she would pass on the responsibility, so to speak. I’d ask her why I hadn’t been diagnosed with anything, and she would say she wasn’t responsible for diagnosing people. Which is of course true. CPNs do not diagnose people, only doctors can do that. So why was she treating me then if there was nothing wrong with me? Her responses were always defiant and accusatory. Why was a diagnosis so important to me? She’d say there was nothing diagnosably wrong with me. But if she wasn’t qualified to diagnose me, why was she qualified to make that judgement? Eventually she referred me to a psychologist and, finally, a psychiatrist.
“One of the worst cases of diagnosis shaming I have experienced is from the psychologist she referred me to”.
Rowan Wild (2018)
Let me clarify what I mean by “diagnosis shaming.” I mean someone who is insistent that diagnoses of mental illnesses are not important, do not exist, or should not be considered during your therapy sessions. Someone who makes you feel ashamed for having a diagnosis, talking about it, or wanting one so you can better understand yourself.
Now, back to this psychologist. We’ll call her Lyn.
Lyn and I did not see eye to eye to say the least. From the get go, she would pick apart my body language. Instead of trying to use conversation to have me loosen up and trust her, she told me to take my coat off, take deep breaths, stop shaking my legs, and uncross my arms. Granted, this is all good advice. But this is not appropriate advice to give to someone who is clearly in distress and doesn’t trust you.
If she had read my notes, or even had any concept of how to start up a conversation, she could have asked me things like, “What music do you like?” or, “What’s your favourite movie?” Small questions that don’t feel like an attack on you as a human being. Questions to warm up the conversation rather than an someone taking jabs at your personality.
One session, Lyn decided to ask me about my friends. I explained to her that I am very lucky because most of my friends have mental health issues and disabilities. This makes them incredibly understanding if we have to cancel plans because of our mental health.
This is when Lyn asked, “what’s wrong with your friends?”
Okay, Lyn. Weird phrasing, but okay.
“I’d say more than half of my friends have autism, and most of my friends have anxiety disorders. Then a couple of my friends have personality or mood disorders.”
“Have you tried finding friends who don’t have problems?”
My face fell. “No,” I told her.
“Why do you think you surround yourself with people with autism or anxious people?”
“Well I think you should start to look for friends who don’t have autism, or these other ‘diagnoses.’ It would be good for you to go out and look for normal friends where you don’t have to talk about all your problems and you can just talk about other things.”
At this point in the “conversation” I stopped responding. I’m fairly sure this is one of the sessions she decided to video record. I have never felt so much anger as I did in that session. After that, I made the decision to stop seeing her. Each time I left her appointments I felt more invalidated. More like the problem was with me as a human being, rather than an illness caused by trauma making biological and chemical changes in my brain.
Eventually, after going through several other CPNs and several psychiatrists, I was finally diagnosed with emotionally unstable personality disorder, post-traumatic stress disorder, and recurrent depressive disorder.
“Finally. I cried when the letter came through. They believed me. I was taken seriously”.
Rowan Wild (2018)
It was as if all these years I’d had a broken leg that wasn’t healing properly because I’d continuously been told by professionals that it wasn’t broken. At last, they’d decided to set the break and I could begin to heal.
Then they discharged me.
Apparently there was nothing more they could do for me. This is in spite of the fact that the psychiatrist had only just diagnosed me and made changes to my medication.
Although I had had dialectical behaviour therapy, I had had no treatment to help me cope with my flashbacks. I hadn’t even finished my sessions on coping with panic attacks. (And that’s not even getting into how I told my CPN my problems were with anger management and not panic. But no. She was an expert in me. It must be panic attacks that are the problem because that’s what it is with most people.)
Since May this year I have been discharged from the community mental health team, attempting to cope on my own.
Yesterday I returned to therapy. This time it wasn’t with the NHS, but a family friend doing my relative a favour. From here on in I will be referring to the psychologist I saw as “Therapist.”
Therapist is a fully trained and qualified psychologist, counsellor, and hypnotherapist. Okay, I thought. Hypnotherapy is the only one of those I haven’t approached before and might help me cope with trauma. Sort of like EMDR therapy or something.
The session was in Therapist’s home, and my relative drove me there. I’ve been struggling through a deep depressive episode lately, but with EUPD that doesn’t always mean I’m depressed.
She asked me to sit down, went through the formalities and asked me to talk about myself. I explained my diagnoses, and this is what she said.
Her words were that these “labels” have only been about and used for the past 100 years or so. By that logic, any advances in medicine and medical understanding are redundant?
Therapist believes that labels make people worse, causing the person to only see the world through this lense of depression, or anxiety. Labels put you in a box.
I explained to her that I am not my diagnosis. I am not emotionally unstable, I have emotionally unstable personality disorder. I have accepted that I may never be without my illness, and I will likely have cycles of depression my whole life. This does not mean that I am powerless to the illness, as she is suggesting.
Diagnoses are not fences around you, they are a starting point on your recovery map. They are acknowledgement that, “okay, these are your symptoms and these are the most common treatments that are successful for that, but if they don’t work we can try something else.”
Now, I have decided that if I am offered the opportunity to see a psychologist again, I could only work with someone who acknowledges my belief in diagnoses. I wouldn’t even need them to believe in diagnoses themselves. I just need to know I am being taken seriously. That my illnesses are acknowledged as just that, rather than seen as character flaws.
If this experience sounds like something you have faced in the past, please know that you are within your rights to ask to be seen by a different mental health professional. There is plenty of research to say that patient-therapist relationship is a key element of recovery. If you feel you need to file a complaint against a healthcare professional, you can do that through PALS (Patient Advice and Liaison Service).
By Rowan Wild