Diagnosis Shaming from Mental Health Professionals – (collaboration with PsychAssist)

Good evening! Long time no see! I have been experiencing a long depressive episode since coming down off the hypo-mania I experienced with my med change a few months ago. I am super sorry for my absence.

However, here we have an article I’ve written in collaboration with PsychAssist. PsychAssist is careers service for psychology graduates to help them get their foot in the door. They have worked with qualified psychologists to bring you tips and tricks to increase your employability within the profession.

If you’d like to learn more about PsychAssist you can find them on Twitter @Psych_Assist and Instagram @PsychAssist.

Now, for the content…

 


 

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.

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.”

Her response?

“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.

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 hereon 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).

 

Stay safe, stay well, stay alive.

Rowan.

Living the Dream: what it’s like to dissociate

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(Image: Me, when I’m dissociating)

Do you remember those games you’d play in primary school?

Where you’d cup your hands in a ball shape and your friend would place their hands around yours, pushing your hands with their palms, and you’d push back against them?

Then after a while, they’d take their hands away and you felt like there was an invisible ball between your hands that you could stretch and manipulate?

Weird feeling, wasn’t it?

For me, that’s what derealising feels like around my entire body.

Derealising is a form of dissociation that, in short, makes you feel like the world around you is not real.

This past week I’ve been experiencing some intense dissociation. Chances are, if you’re here reading this you have some idea of what ‘dissociation’ is, or maybe you’ve heard of it before.

If not, a generalised summary of dissociation is the feeling of disconnect from the world around you. To varying degrees of severity, it affects your cognitive function (so, like, your memory, concentration, feeling of identity) and is generally thought to be caused by significant stress, trauma, or as a side effect from medication. That’s dissociation in brief, anyway. It presents itself in a lot of different forms which you can read more about on the Mind website.

You don’t have to have been diagnosed with a specific dissociative disorder to experience dissociation, though. Personally, I experience it as a side effect of my PTSD and social anxiety disorder.

It isn’t until later in life I realised I’d been dealing with derealisation and something else called depersonalisation for the majority of my teenage years. Depersonalisation is, pretty much, the feeling that you are not real, and feeling disconnected from your own self.

I’d walk around school feeling as if I’d left my body. I looked at my hands, and they felt unreal. I looked at my friends and my surroundings and felt like I was looking through dream fog. As if my alarm clock was about to ring and I’d wake up somewhere else sweating, with a massive sleep headache from being dead to the world.

It always terrified me, and now it makes me exhausted all the time.

What prompted me to write about this is that yesterday I had one of the most severe episodes of dissociation I’ve had since my ~Official Breakdown~ in 2015/2016 when I was having total blackouts and psychosis but that’s another story for another time.

So I was walking around town on the hunt for a specific item of clothing and saw GAP, a place I have never set foot in in my life.

I wandered in, a conspiracy podcast soothing my little ears through headphones, and immediately I was over-sensitised. The bright LED lights, the walls and walls of clothing and unclear layout. I closed my eyes for a second, then tried to focus on the things I could see. Typically, a good grounding technique if you’re dissociating is to list five things for each sensation you’re experiencing.

It was the simultaneous experience of seeing everything so vividly whilst also feeling like I’d been knocked outside my own head and the door back inside had been locked.

Okay, I thought. Let’s just have a quick look around and see what we can find.

Walking further into the store, I felt like I’d been winded by sensory overload. I started to black out.

It felt as if I were looking out from a glass box that someone was drawing the curtains over.

Usually I catch the dissociation before it gets that far, but this time I honestly couldn’t see from the anxiety and the overwhelming sense of being unreal.

So I left and decided to get to a place I recognised. I walked into another store I know and love but the same thing happened. Once again, my vision started to fade and I couldn’t make sense of the words my podcast was saying.

It was at this point I left the shopping centre and went to wait outside for my friend as we’d planned to spend the day together. She eventually turned up and was amazing at drawing me out of that glass box I was looking through. We went for milkshakes and some retail therapy which I found manageable with her. Yet for some reason my broken brain couldn’t handle it on my own, when usually I love shopping alone. Weird!

If you guys are interested in learning more about dissociation, I’ve listed some links below to documentaries or films that have informed my understanding of myself.

‘Diaries of a Broken Mind’ – A BBC Three documentary about Dissociative Identity Disorder

‘Numb’ – A 2007 film with Matthew Perry, about a man who experiences dissociation as a side effect of smoking weed. I honestly don’t know how often this happens to people but the representation of how some people cope with dissociative disorders and how difficult they can be to diagnose is pretty great.

Dodie is a singer and musician who lives with derealisation and she explains how she experiences dissociation concisely in the video I’ve linked.

I do hope you’re all doing well. I’d be interested to hear how you guys experience dissociation in the comments. It’s always useful to help me further my understanding of how other people experience the world.

Love and hugs,

Rowan.