People and pickle jars: the pros and cons of diagnostic labels

At a recent mental health event I heard a service user complain, “it seems like you can’t get any treatment on the NHS until you’ve got a diagnosis!”

I’ve now been thinking about this for week, and I’m sorry, but … what exactly is so wrong with that? Would you trust a doctor whose approach is to get you started on a treatment programme, and then decide what’s wrong with you? I’d have a serious problem with, say, a gynaecologist whose basic approach to patients was, “I have no idea what’s wrong with your ladyparts, but don’t worry – I’m going to give that some serious thought at some point after I’ve whipped your uterus out!”

A diagnosis is just a working hypothesis about what might be wrong with someone, a theory about what’s wrong and (perhaps) why. From this theory flows a range of possible treatment options. The art of diagnosis in mental health is probably murkier and more complex than in most physical health conditions, but many bodily ailments also have a range of differential diagnoses based on clinical the interpretation of a cluster of symptoms. If you present to A&E with excruciating abdominal pain, the diagnostic process – establishing whether you are a surgical or medical case, have a new disorder or are in an acute phase of a chronic condition – will determine whether you have an operation or drug treatment, whether the drug treatment is by mouth or IV, and so on.

In both physical and mental health problems, there is potential harm to be done by not giving someone a diagnosis. It took from age 12 until the age of 20 to find anyone willing to pin a diagnosis on me. I’m fully aware of labelling theory, and of course I understand that clinicians might be nervous of giving a young person an identity as “someone with a mental illness”. But not putting me in that category meant that I got very little in terms of any treatment that might have eased my distress. The fact that I survived and gained the qualifications I needed is in spite of the fact that no-one even began to touch the pattern of deep, recurring depressions I experienced (I don’t blame them for not treating the bursts of energy and the grandiose thinking, because I never saw them as a problem). The ironic thing is that the medical profession’s care not to label me as “a depressed person” gave my brain free rein to develop habitual patterns of depressed thinking: 8 years, right at the age at which people’s personality traits are becoming established, of unchallenged “maladaptive coping mechanisms” such as self-blame, fear of failure, guilt, and self-hatred.

It’s certainly true that some diagnostic labels have more baggage attached to them than others. Talking openly about depression and anxiety, for example, has become more common and acceptable in recent years. But there is a continuum of public acceptance, with diagnoses such personality disorders and schizophrenia having a very long way to go before their associated stigma disappears (exacerbated by the fact that few non-sufferers understand what these labels actually mean). But overall, I have found it useful to have diagnostic labels applied to me, and not just because they have helped me access useful treatment.

As far as I’m concerned, a diagnosis is some sort of measure that I’m not just making it up. There is something wrong with me, in the eyes of a specialist clinician. My partner finds it very funny that I could have had any doubt that I really haven’t been well this year, but part of me holds a belief that I should just be able to get on with things and that if I can’t, this is evidence of some sort of character weakness. My diagnosis reminds me that I am not being a malingerer or making it all up, and therefore helps me to be kinder to myself.

Secondly, getting re-diagnosed with bipolar allowed me to seek out information on the internet and read up on the experience of other people with the same diagnosis, and this really helped me to contextualise some of the very strange experiences I’d been having. To find out that hypersensitivity to sound, taste and colour, while not exactly normal, is quite common for people experiencing a bipolar high was very comforting. Discovering that disturbed sleep can be a trigger for many people’s episodes helped me understand why I have in the past become unwell after shift work and after my sleep has been repeatedly disturbed by noisy neighbours. Seeing my symptoms as a manifestation of bipolar, not something that I alone go through, makes me feel less weird and isolated.

Using the bipolar label has also hooked me into an online “bipolar community”. I receive fantastic emotional support from people who’ve been there, who know precisely what I mean when I describe my mood states and the difficulties associated with them. Information is also shared; people suggest websites, articles, or books that they’ve found helpful, and discuss treatment plans and their experiences with medication. If I hadn’t had Twitter friends to advise me how to manage the extreme nausea I was experiencing from lithium, I might have given up on it by now.

Of course, I completely support anyone’s right not to be defined by their diagnostic label. I know there are many people who subscribe to the maxim that “labels are for pickle jars, not people.” Equally, if you have been given a label and it doesn’t feel like the right one for you, you’re not going to rush to embrace it. But I like my current label. I think it fits, I feel much less alone than I did six months ago, and it’s substantially increased my chances of getting treatment that addresses my highs as well as my lows. Like any diagnosis, it’s just a tool, but I think it’s a useful one.

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About purplepersuasion

40 something service user, activist, writer and mother living with bipolar disorder. Proud winner of the Mark Hanson Prize for Digital Media at the Mind Media Awards #VMGMindAwards 2013. Winner of the World in Mentalists Mood Disorder blog 2012. Regular guest blogger for the International Bipolar Foundation http://www.internationalbipolarfoundation.org/ Expert by Experience working with Mind training department. Working on The Incoming Tide, a bipolar memoir. Find me on Twitter @BipolarBlogger or at my Facebook page http://www.facebook.com/BipolarBlogger
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14 Responses to People and pickle jars: the pros and cons of diagnostic labels

  1. I must admit, I tend to be of two minds with regards to labels:
    On the one hand, some people can define themselves too much by it, able to think outside of the box that they’ve been put into and are only able to see the problems associated with it;
    On the other hand, they not only provide access to the correct treatment, but also, as you said, provide a chance to see possible solutions to at least coping with the condition via such things as support groups, etc.

    One thing that also doesn’t tend to help is the stigma that’s still attached to mental illnesses, even through doctors, for example I’ve heard of how doctors tend to react to various Personality Disorders! I think one thing that Bipolar has in its favour is the fact that there are many celebrities out there, supporting its case, so some of the stigma has now been removed somewhat. Whereas some other conditions are still in the cupboard, only really starting to be highlighted now as I’m starting to learn about them!

    But I must say something – I have had, like you, a positive reaction to my diagnosis (one thing my psychologist isn’t used to, actually!). For one thing, I have noticed in myself over the last few months that I am more at peace with myself than I’ve ever been. I have actually been on a journey this year to learn who I am, so the diagnosis, for me, was like a final piece in the jigsaw puzzle. But another thing I’ve found useful is how it’s helped me to relate to people – I’ve read many things up on it, have finally been honest about about all things that go on in my mind (partly through recognising them now, and with doing so being less ashamed of it), plus with talking about it you learn many many things. I’ve actually ended up helping myself, having more confidence in myself, by finding out how my honest description of what I go through has helped others!

    But another negative effect of labels is how it boxes you in. Labels, I think, should be used with caution, not just because it’s so easy for people to receive misdiagnoses (as I read in one of your previous posts about yourself, even), but also the fact that it only shows a small portion of a person. If you live your life completely by your label, you won’t be able to experience everything that life has to offer, everything that you’re capable of!

  2. David says:

    I found it very helpful to finally get a ‘label’ – and then only because I ended up being hospitalised. I found it easier to accept I was ill and so receive the help I needed. It also allowed me to begin to recognise the damage that the last 30 years without a diagnosis have done. Talking to my CPN just today helped me recognise the cause behind my waking up screaming at night, for example (something that happened to me in boarding school back in the early 1980s)

  3. Henry Dunn says:

    One of the best lectures I had when training as a Music Therapist was from a young liaison psychiatrist. He went to the piano, played a few pieces of music, then asked us to think of words to describe the mood of the music. We all came up with slightly different variations. He then said “Well, diagnosis in Mental Health is like that”. In other words, it’s subjective and not precise. I think like most things in life, it can be used for good and for bad. If it it brings trhe diagnosed person greater understanding and acceptance of who they are, and means they get helpful medical and social interventions, great. If it is used to deny access to employment, or to stigmatise in any way, it’s bad. Diagnosis per se is not bad, it depnds who is doing it, with what motivation, and whether they understand that is is subjective and changeable..

  4. Mamatiara1 says:

    To me, diagnosis suggests an answer and hopefully a positive one, in that you know what you are dealing with (assuming it’s the correct diagnosis of course) so you can move forward and go on from there. Labels however, always suggest something negative and stagnant – you are often stuck with them – there is no moving forward….once a depressive, always a depressive etc. It becomes “what you are”, your title. Never mind that there might be more to you than that – you might be a mother, son, poet, teacher, astrophysicist or brain surgeon – that mental health label will always be the biggest one people see: yeah, she’s got great artistic talent, but she’s been diagnosed autistic – we can’t give her a job. Too risky.

    Even after thousands of years, society still finds mental health too difficult & painful to deal with and we look the other way. There is more to me than my depression (I hope) but it is the one thing people focus on once I let the cat out of the bag. The diagnosis informed me… the label informs others.
    Keep happy x

  5. Ann says:

    thank you! another thoughtful post. i’m so glad i found you. i have depression (with a pinch of borderline which is now very well controlled! talk about a diagnosis i didn’t want!) so we’re a little different, but i really related to your description of the relief of getting a diagnosis so that you don’t think you’re weak or a malingerer anymore. i felt this relief when i started taking medication and it actually helped. i still think things would be better if i were a better person, but i’m working on it!

  6. nessthehat says:

    Another thought provoking post. After going through most of my life with the rather wooly label of ‘depression and anxiety’, which tends not to be taken seriously and often not even believed, I was pleased to finally receive a specific diagnosis. So far I have found my diagnosis of cyclothymia and personality disorder helpful in understanding my condition, explaining it to others and accessing support. I choose who I disclose my labels to and have not experienced stigma because of them…yet. If I do my feelings may change.

  7. Hazel says:

    “At a recent mental health event I heard a service user complain, “it seems like you can’t get any treatment on the NHS until you’ve got a diagnosis!”

    I’ve now been thinking about this for week, and I’m sorry, but … what exactly is so wrong with that?”

    What is so wrong with that is when no bugger will give you a diagnosis when you are obviously struggling! When you don’t meet the clinical definition for anything. I have tendencies of ADHD, OCD and cyclothymia, but nobody will diagnose me with any of them. My PCT’s mental health team have got together and decided to collectively refuse to acknowledge the existence of ADHD in adults, I’m not bad enough to meet the clinical definition for OCD, nor am I bad enough to be diagnosed with cyclothymia. The community mental health team have refused to see me twice.

    It’s only recently that I have been referred to a community psychiatric nurse. She’s not part of the community mental health team, she works independently of them, so I am lucky, I am able to see someone without a diagnosis. But that’s the problem with diagnoses being necessary for treatment – when nobody will give you one even though treatment is needed, so you can’t get the treatment and are just left to muddle along, not getting anywhere in life and unable to cope.

    • Hi Hazel, then what’s wrong is NOT that no-one will treat you until you have a diagnosis – how can they? – but that clinicians underestimate the importance of diagnosis and resolving the client’s symptoms so they *don’t* have to try and muddle along on their own. It’s not the diagnosis that’s the problem, it’s the lck of support – two different things 🙂

  8. Alicia says:

    I found that actually having a proper, written down, diagnosis really helped me feel that I could live with being bipolar. Weirdly, even though everyone KNEW I was bipolar – I was on mood stabilising medication, my CPN was working on a mood diary with me, everyone was referring to me having a manic or depressive phase, etc, I still kept feeling a failiure for not magically becoming better. If I had to tell somebody a quick medical history (which happens an awful lot when you are in crisis – I have started carrying around a list of my meds, symptoms, next of kin etc in my handbag) I felt like I was giving excuses by saying “I have suspected bipolar disorder, but it could be something else, here is a list of my symptoms, I’m not feeling sad about anything, in fact I am doing this odd thing because I actually know the secrets of the world although on some level if I am talking to someone official I must have either asked for help or been caught doing something really weird I must know that I’m not right, but I’ve definitely not taken drugs, except the ones that I’m meant to blah blah blah”

    Being able to just say (or have someone read) “rapid cycling bipolar I” meant that I somehow felt the pressure was off. I didn’t have to explain myself, because the label did it for me.

    That’s not to say I wouldn’t ramble on anyway if I was manic, but at least the diagnosis gets to the point 🙂

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