Do labels matter?

Throughout my experiences of the mental health system since I was around 14 until now at the age of 26, I have been given many different labels. Psychiatrists and psychologists can’t seem to figure out which box I should fit in. I have been told many times ‘not to get too hung up on the diagnosis’, and at times I have told myself it doesn’t really matter. But my opinion on that is changing, because as a women who has been through trauma and has been abused, exploited, silenced and shut down for what feels like almost my entire life, the words that are being used to explain my story really do matter.

The first diagnosis I remember receiving was a mood disorder of the cyclothymic type at the age of 14. When I was 16 I was sectioned in a psychiatric unit because the psychiatrist who admitted me thought I had Bipolar and wanted to try me on mood stabilisers. Once admitted I was under the care of a different psychiatrist who after a few days decided I had Borderline Personality Disorder (BPD) and I was told I was no longer being detained but could stay on a voluntary basis. Of course at the age of 16 on an adult psychiatric ward, I was definitely not hanging around voluntarily so I was discharged. BPD is a highly stigmatised diagnosis, and I was suddenly treated as if my experiences and illness were my own fault and that I was not actually unwell, but just someone who needs to change their behaviours. I did not understand what I do now about the BPD diagnosis, that it seems to me that it is used to silence women who have been abused. You may not agree with that statement, but from my own personal experience I believe this diagnosis was used in order to make me responsible for what others have done to me. Rather than asking ‘what has happened to you and what can we do about it’, the question became ‘what is wrong with you and why are you not dealing with what has happened to you in a socially acceptable manner?’. The way I was treated after this diagnosis prolonged my pain and symptoms of trauma, and after having spent years being silenced and feeling without a voice this was reinforced to me by the system in place which was supposed to be helping me.

10 years later and I have still had different opinions about what my diagnosis is. I know that I don’t agree with the BPD diagnosis, and am unsure about Bipolar. What I do know is that the two psychologists who have had more of an insight into my life than any other mental health professionals, have both diagnosed me with post traumatic stress disorder (PTSD). This is the only diagnosis that has ever made any sense to me, and is the only one which recognises the impact trauma has had upon me. I thought I was getting somewhere when the psychiatrist on the crisis team also gave me a working diagnosis of PTSD, but since being admitted into hospital and being under the care of my new psychiatrist I have again been told I either have Bipolar or BPD. And I have once again been told ‘not to get too hung up on the diagnosis’.

Since I have been given medication to stabilise my mood and referred for trauma therapy, you might think it wouldn’t matter so much what labels they have given me as long as I get the right treatment. But the next time I have a relapse and I am at my weakest moment and asking for help, the nurses, psychiatrists, psychologists and whoever else is involved will look at my notes to find out what my diagnosis is. This will change how they treat me. I might be treated as someone with an illness which requires medication and hospitalisation. I might be treated as someone who has been severely traumatised and requires therapy. Or I might be treated as I have been in the past as someone who is just being difficult and needs to change my behaviour. All because of the labels they keep telling me not to worry about.

These labels change how my story is seen by others. Mental health professionals have the power to do that, and in effect they have the power to silence me through a diagnosis. As someone who has been silenced far too much in my lifetime, I’m saying yes it does matter. I’m saying yes I will get hung up on the labels if I want to, and I will disagree if I want to. And I will use my voice to say if a diagnosis does not fit with my story. Because it is my story. I am the expert on my life, on myself, and on the ways in which trauma has impacted on my life every day. I am a woman who has been silenced, exploited, sexually abused and shut down for years and I live with the impact of that every day. The labels that are used to explain my story do matter, and mental health professionals need to begin to understand this. The words, labels, and diagnosis’ they use have the power to either silence me further or help me. It matters.

6 Comments

  1. First, I’m sorry & sad to read that you have been through both trauma and neglect by MH services.

    Second, I find it shocking that 38 years after the addition of PTSD as a defined diagnosis in the DSM III that MH services and therapists still don’t use it enough to help, and instead toss you around with other sub-diagnosis which may or may not be co-morbidity diagnosis or part of your PTSD symptoms, but that they don’t even acknowledge this possible link and instead silence or neglect to pass to the next phase, which should be therapy to hep you cope better on a daily basis, and in time, heal as much as possible from your trauma.

    Third, diagnosis of PTSD has been further expanded and isn’t an unknown factor. We already have the 4th or so version of it by DSM V and your traumas aren’t an obscure kind, but very well studied by therapists and psych-researchers for decades – even before 1980’s term of PTSD. So, it baffles me that you’re still not getting this help.

    Fourth, I recently read a book that may help you shed light and maybe bring to your next therapy or MH appointment, as a guideline to show them this is what you’ve experienced and this is how it affects you. The book is called post-traumatic therapy and victims of violence, edited by Frank M. ochberg, who called-in 17 collaborators, with an emphasis on a feminist approach. I’ll send you the links to my reviews & details of it. You’ll see their established guidelines for therapists dealing with trauma, and one of them is of prime importance : not to put blame & guilt on victims. This is a must, rule #1!

    I hope that with it, you can gain insight and the therapy that you deserve in order to start your healing process – and I’ll remind you that I’m here to give you support any time that you need. With hugs & love, Lulu

  2. I could really relate to this. I feel like the psychiatrist on a ward I was tried to offer me a BPD diagnosis after I told him I was raped. I fought that diagnosis until the end because none of it fit me. Finally I was diagnosed with depression, but I feel like the psychiatrist thought that I stayed in a sexually abusive relationship because there must be something wrong with my personality.

      1. Thank you! Yes it made me feel like I wasn’t being taken seriously. Luckily enough I spent three months at the said ward and anyone was able to see that I didn’t fit any of the traits of BPD. I said I’d live with any diagnosis, if it’s the right one. I really enjoy your blog, but I’m sorry you’re having such a hard time. Please try to remember to be kind to yourself.

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