Jagged little pill: has the recovery narrative gone too far?

I feel that in writing this post, which has been brewing for a long time, I am saying something that some might see as controversial. So let me start by making something clear. This post is not intended to criticise the work of the big charities – I am a proud member of Mind and Rethink Mental Illness and have undertaken both paid and voluntary work for both organisations. I have also volunteered for Time to Change and made a TTC pledge at last year’s Mind Media Awards. A huge amount of good work is being done on a daily basis to challenge public perceptions of mental health and to normalise discussions of the topic. Time to Change is entirely right to highlight just how peculiar it is that mental health stigma continues to loom so large given that a quarter of the population is thought experience some form of mental distress.

In this quest to normalise the topic, to reduce fear around mental health and those who live with psychiatric diagnoses, a sanitised depiction of the lived experience of mental illness has emerged. Mental health education directed at “the public” (rather than at service users) has a new defining discourse that appears to be “I had an episode of [condition X] but I sought help and with the support of my family and my mates I’ve recovered and I’m back at work.” I feel that things have reached the stage that the story “people recover from mental illness” has overtaken the somewhat more accurate “many people can recover from mental illness”. The key goal in recovery seems to be to demonstrate that you are “fine” becoming socially and economically active again, by becoming your “old self”.

This is a model of mental distress as temporary, life-changing perhaps in the sense of making the individual seeing things differently – developing newfound empathy, for example, or a greater appreciation of their support network – but not fundamentally altering the individual’s perception of themselves. Indeed a number of recent anti-stigma media campaigns focus on people with mental health conditions being “just like you or me” or “still one of the lads”, i.e. not noticeably mentally ill and therefore not scary. It’s important that the individual is not seen as scary, because what the campaigns want colleagues or friends to do is to reach out, by having a chat by the water cooler or sending a text asking how they are doing in order to cope.

This is not my experience of mental illness.

I am extremely positive about early intervention, not just in psychosis, but in any mental illness. We should indeed be striving wherever possible to make an individual’s first episode of acute mental distress their only episode. I often ponder what my life would be like if I had first been effectively treated at 13 or 17 instead of 27. My son is having his first significant experience of anxiety and low mood and I am very pleased that my local CAMHS wants to give him the skills via CBT to manage his issues now, rather than waiting for them to become more entrenched before anything is done.

But like many other people in the mental health community, I am not going to completely recover. It’s just not going to happen. I’m not being negative; the research into patterns of people’s bipolar shows it is simply a fact. I may be entering a period of remission but I know with absolute certainty that I will relapse at some point, even if I’m 100% treatment compliant. And it’s no good portraying me as “just like anybody else”; much of the time of course I am, but there are times when I am not. There have been times when I have rocked back and forth on the bus because I was manic and trying to hold in the urge to run around the bus screaming. There have been very many times when I have cried in public, occasional times when I have had panic attacks outside. There are times when I believe things that I have had to keep to myself, because I know people will be almost as frightened by the fact that I have having persecutory “unshared beliefs” as I am by their content. And I’m ashamed of it, but when I am hypomanic I am not very good at keeping my temper. It’s rare, but I sometimes exhibit what services call “challenging behaviour” for this reason. And all that’s way before I even get to crisis point. Sometimes I will seem weird. Sometimes I know I seem scary. This is not my fault, so sometimes the Just Like You and Me model makes me feel a poor societal fit.

Just as it is no good saying I am “just like anyone else” it is hopeless to say that I am now “recovered” and can make a full return to the workplace. Even though my mood is now normal, that would all come crashing down if I had to suddenly return to the workplace (assuming I could get up and get there on max doses of bipolar meds). I fully understand that within organisations a full recovery is desirable; nobody wants to go through the process of long-term sick leave, employer or employee, and the ending of a contract due to any health problem is a huge deal. But I want a narrative that acknowledges that for people with severe and enduring mental illness long periods of mental ill-health  is the likely reality. That the issue should not be shoehorning us into a recovery that makes us fit for work again, but building enabling workplaces that support those of us for whom mental illness is a lifelong disability, rather than a one-off episode.

I feel like I have become the voice that responds to phrases like, “Most people will make a full recovery,” with a swift, “But even if they don’t, they still have skills and talents and value, and we shouldn’t waste that.” Sometimes doing so feels uncomfortable, even though I’m still advancing a recovery narrative, just one with a different view of recovery, that is more complex. It has some jagged edges, so it may be more difficult for the general public to swallow. But if the dominant discourse is allowed to become about the more palatable, sugar-coated “complete recovery”, it is shutting out those with long-term mental illness – yes, those with bipolar and schizophrenia and schizoaffective disorder, but also people with a diagnosis of personality disorder and those with disabling long-term anxiety disorders, eating disorders and recurrent depression. Pretty much anyone, then, that uses secondary mental health services.

I’m left trying to steer a middle course, one that is optimistic and doesn’t write off the possibility of recovery for many people. I want to communicate that positivity and hopeless when I deliver training or speak publicly about mental health. I am not suggesting for one moment that we chuck out the recovery narrative. But I want us to be real. I don’t want “the public” to have unrealistic expectations of me, or of my countless friends who also have no choice but to be in this for the long haul. Weird or maybe sometimes scary, this is who we are. I have to keep pushing this jagged little pill.

pills

Advertisements

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
This entry was posted in Activism, Mental health, Mental health services, Stigma and discrimination and tagged , , , , , , , , , . Bookmark the permalink.

165 Responses to Jagged little pill: has the recovery narrative gone too far?

  1. Sam Candour says:

    Very well put, as always. If people are lulled into thinking that a complete recovery from mental illness is always achievable then what of those for whom it isn’t? Will they become even more marginalised, or dismissed for not trying hard enough to recover? Both narratives need to be publicised in tandem.

  2. Nick says:

    Some of us started a Facebook Group ‘Recovery In The Bin’ to discuss issues about MH ‘recovery’, and shared concerns, like colonisation by services. I agree that ‘complete recovery’ seems to be the prevailing narrative when the reality is very different for many of us.

  3. It is society’s view of all illness. 1, It doesn’t/shouldn’t impact on anyone else around you. 2. Economically activity is the benchmark of recovery. 3. A person’s value and identity is tied only to that economic activity. 4. Illness of any nature should be tidy, undertaken only at appropriate times and got out of the way as soon as possible. 5. We live in the age of medical miracles; you can be cured of anything. 6. If you don’t recover, why aren’t you trying hard enough? 7. Everyone is alike, preferably identical. Please conform. Thanks for writing this. 🙂

  4. Reblogged this on and commented:
    Whether mental or physical, illness comes with a barrage of baggage – how you see it, how others see it, how others see it. Is it naive or simplistic to hold out for a cure? And who does a sanitised view of illness really benefit? Food for thought.

  5. Thank you for articulating something that has been bothering me recently especially as I am going through the process of discharge and ‘recovery’ at the moment. I have found some of my negative thinking and emotional instability returning despite ‘feeling’ and being told by MH professionals that I am doing ‘well’. I remember when I started treatment four years ago, being told over and over that I will never get rid of my ‘condition’ – so why do I feel I need to be ‘working’ towards recovery more than I am? Why am I trying again to fit myself into a work and life pattern that just is not sustainable? Your blog has made me realise that I have a long term complex mental health condition and trying to make ‘me’ with all that means fit into ‘normal’ working life, just isn’t going to cut it. I cannot conceive of any employer looking at me, including my experience of Mental Health and considering me a good risk as an employee. I do think one of the pressures comes from the changes to the benefits system as I feel that having come through a period of treatment and been told that that is designed to help me live a life worth living, then I must be bound to rejoin the workplace – as if that is the biggest part of such a meaningful life. I also fear how I am going to make ends meet, particularly if I have to face a WCA as a result of my discharge. In the end recovery is possible for a while (maybe it should be called ‘respite’) for long term intractable conditions. This is not to take away from the fact that other conditions can be recovered from – as they are not long term

  6. This is so important and well-articulated. I think in some ways this view is especially endemic with trauma disorders – every professional I have ever encountered pushes full recovery as a model. But every survivor I know has lifelong problems, some severe enough to never be able to work. And I think it promotes a view that we are not okay as we are – that we always need to be changing, slowly pushing ourselves into something that fits more neatly into society. Thank you for this post!

  7. Amanda says:

    Very well balanced Charlotte.

    Did just want to say that of course, as you’ll know I’m sure, but other don’t I think, that just because someone is able to work doesn’t mean they are necessarily recovered either or ever will be either… Doesn’t mean the situation is the same (then again, no two ever are), but such a tendency by too many to think that just cos someone works that that means all is fine

    But while this is a very topical issue think that this definitely lays it out better than anything else I’ve read. Thank you.

  8. Nina says:

    I’m sure you of all people know how impossible it is comment here without relating the idea of ‘recovery’ to personal experience, but I will try.

    I share your disquiet and doubt. Actually, I feel it to a much greater degree. I question the TTC campaign because it doesn’t include me, or those like me. There are many dangers.

    1. As you pointed out, that the narrative leaves no place for those of us who might never fully recover from mental illness, who might need support in times of crisis and periods of illness for the rest of our lives. I’d go further and say that given the current political climate, failure to recover may eventually be given as evidence of some kind of personal failing and malingering. Cue pointed fingers and punitive punishments, much worse than what we already see.

    2. Recently, I found out that all service users are geared towards eventual discharge. Without exception. Recovery in that sense is a way to get people away from services rather than help them. I don’t see that going well for any of us.

    3. Treatment in the field of mental health may claim to be victorious after a successful campaign to highlight recovery, when really nothing is further from the truth. I think that we’ve barely scratched the surface of mental illness, it’s causes and treatments, and the recovery idea is putting the onus of finding a solution on sufferers instead of researchers and professionals. So, if there is anything out there that might make a real difference to those of us who suffer from mental illness, it’s going to take that much longer to find it, because the will to find it is disappearing.

    4. From everything I’ve seen of the TTC campaign, it doesn’t strike me as doing anything much for those with mental ill health either. When I boil it all down, it’s basically the same as saying: “Get over it.” The only difference is the wording, and the idea that a little time, a cup of tea and a chat will make everything all better (if it doesn’t see point 1.). I find it completely ignores any and all of the social issues that contribute to mental ill health, and discourages discussion/narrative of such.

    I suppose what I’m trying to say here is: what happens when a cup of tea and chat doesn’t work? When CBT doesn’t work? When mindfulness doesn’t work? When antidepressants don’t work? When whatever pet ‘cure’ your mental health team believes in this year… doesn’t work? When you find yourself at point one in front of a wall of critics that include your team because you didn’t find the answer within yourself?

    The Time to Change campaign won’t help then, because people will point to it and say: “But your own charity gave you a great opportunity to say what mental illness was like, and you didn’t mention any of this ‘not getting better’ then!”

    I’m sorry… I really am. Because I follow you and respect you and I know from your post that it’s dear to your heart, but these are my thoughts. I can only hope I’m wrong.

    I’m going to give in and include a personal experience now. Recently I had my diabetic medication increased four-fold (when I thought I had been doing okay). A shock. So when I saw my CPN lately I said that it was impossible to live between Bipolar and Diabetes, because the things I do to survive each day are the things that are killing me over the course of the years.

    I asked him directly what to do. Despite being very depressed and having been so for nearly three years without a whiff of hypomania, or even normality (at this point, I’d even take slightly depressed), I do permitted work. I see a psychologist to work on other things. I attend groups to help with being socially isolated. I walk my dogs. I try to eat properly. I try to attend to my self-care. I do all of this to avoid being actively suicidal. But they’re so many spinning plates, no matter how carefully and slowly I add them together. I have limited resources, and so I keep dropping things, over and over again. His answer?

    You don’t exactly do a lot to make yourself feel better.

    Even the most well-meaning people act strangely when they’re faced with not having the answer. I can’t help sensing that this will be repeated on a much larger scale, and then what? I don’t know, because whatever expectations there may be, I don’t have the answer either. I can only try. We can try. But what happens when that isn’t enough?

    • It’s difficult to reply to this… as you will know, part of my work involves delivering “the recovery narrative”, although my hope is always that it is better for me to do this and to offer a more nuanced approach than for it to be delivered by someone without that nuance. This is why I force myself to make difficult disclosures. When talking about psychosis, for example, I share my experiences of feeling persecuted by beings from another dimension. It’s scary. It feels like it crosses a line, and that’s because it does. Other experiences I share – depression, anxiety, panic – are at the less scary end of the continuum and nobody really bats an eye. In talking about the stuff that scares people I hope that I create an alternative to “I’m just like you!”, which goes more along the lines of, “We thought she was just like us – but she’s not! Hmm, what do I think about THAT?” I feel like this, along with blogging and regular tweeting about my bipolar, is a way for me to make a living within mental health whilst offering a challenge to (or perhaps an extension of?) the standard recovery narrative.

  9. chrismcleary says:

    I hope the Scottish Recovery Network put the video from today up on their website at some point as the speakers highlight almost every point you’ve raised here.

    I’ve never been much of a fan of labels but it seems that that’s where something like this is going. Recovered, partially recovered, non recovered, unrecoverable etc. I’ve been under the impression over the last few years that the reason there are several hundred mental health charities along with the NHS is to help people “recover” in whatever way suits them best.

    Attempting to explain that recovery doesn’t always mean full recovery is just another example of the mental health community apologising for no reason. Would you want a campaign to explain remission?

    • Maybe! Or not necessarily remission per se, but *fluctuation*. Because if people don’t understand that conditions fluctuate and that the extent of this cannot be necessarily be controlled, not even with strong drugs, then we are “not trying hard enough” or assumed to be “not following our treatment regimen.” Saying, “I honestly don’t know when I will able to… (leave the house, go back to work, increase my hours, volunteer, get out of bed, come of medication or whatever)” needs to be seen as realism and truthfulness, not us being obstructive or maybe deliberately vague.

  10. Nick says:

    I want to hear stories of resilience not ‘recovery’, which I feel would be more meaningful and inspiring…

  11. I’ve been uncomfortable with the direction of the recovery narrative for some time – it just doesn’t seem applicable to me – but as so often, it’s taken you to articulate what I am thinking! I go back to this quote often; it allows for the possibility that mental illness changes who you are and that there may not be any going back to the person you were before, yet one can still have a meaningful existence.

    ““Recovery is a deeply personal, unique process of changing one’s attitudes, values, feelings, goals, skills, and/or roles. It is a way of living a satisfying, hopeful, and contributing life even within the limitations caused by illness. Recovery involves the development of new meaning and purpose in one’s life as one grows beyond the catastrophic effects of mental illness.” Anthony WA (1993) Recovery from mental illness: the guiding vision of the mental health system in the 1990s, Innovations and Research, 2, 17-24.

    I’m not there yet, and perhaps I never will be but I think it’s a much more realistic goal than complete recovery.

    • But even that realistic goal isn’t good enough for a system which is designed to simply sort people into “fit for work” and “need support to work” groups. Sigh. I don’t think I will ever work full-time again, not least because the meds to control the bipolar are in themselves disabling. But I am lucky, I have another wage-earner at home. If I didn’t, well, I earn too much for benefits but not enough to live on…. xxx

      • I have had it up to here *indicates outer space* with the system. Still no further in getting referral for anything other than CBT (even though CBT therapist agrees it’s not appropriate and I need a psych diagnosis). My MiL has offered to pay for me to see a private psychiatrist, but that still requires a referral which my GP isn’t qualified to make!

        Meantime, I’m about to resign from my job as I am simply not up to it, Work have been supportive but at the end of the day I’m not able to fulfil the brief and I know I’m not capable now of what I was 5 years ago.

      • A dream of mine is to one run some kind of enterprise where I can employ you 🙂

  12. Nick says:

    Yes – Resilience is more truthful to our (sometimes) daily struggles. It cant be imposed on us too like ‘recovery’ can be.

  13. Pingback: being and becoming at there is no should

  14. Andrea says:

    Good post, Charlotte. I think you are right about mental health campaigns directed at the general public- they don’t show the “scary” side of mental ill health and so that part of our experience is effectively silenced. My view of recovery is that it’s not about being able to work or about what other people think of as “completely recovered”, it’s about being to live a meaningful life, whatever that means to you, whether you have ongoing symptoms or not.

    I have a BPD diagnosis and an anxiety disorder, and my MH problems are most definitely a long term thing. I’ve gotten better at emotional regulation over the years but I still have regular meltdowns and panic attacks and have to constantly manage my symptoms all the time. But whilst living with all of that I have managed to start building a life based on my values, using the talents & gifts I’ve got. For me right now that means studying, eventually hopefully working, and building my network of relationships and friends.

    It’s quite surreal having a full on borderline meltdown at home one day and the next day feeling completely fine and functional, but that’s the nature of a long term fluctuating illness, and it’s what my recovery looks like.

    • Hi Andrea, I am very similar, trying to build a new life, testing my limits and trying to give myself permission to sticking to them, since they give me the best chance of staying well for longest. Trying to work as I used (full time and for a massive organisation) would be a fast route back to the kind of pain I’m only now getting a bit of a respite from. Same with socialising, sometimes I am tempted to do more but mostly I stick to my rule of seeing one friend or attending one social event per week. Yes, I had a ball last time I was in remission, working hard and playing hard, but when I then relapsed I fell further and harder than I ever could have dreamed. I do what I can, when I can 🙂

    • Amanda says:

      Hi Andrea

      Just wanted to say that I identify with your comment.

      And re meaningful life, with or without symptoms, that’s what I hope for too – but I have a meaningful life in my career… but my BPD stops me having any meaningful life beyond that, and a career will never ever be enough…. nor should it be…

      And I read your comment earlier, and was replying, and just noticed the word ‘surreal’ for the borderline meltdown one day and fine and functional the next, and it was the word ‘surreal’ that was already in my head. Difficult, confusing, and definitely surreal.

  15. Somebody says:

    I understand the point of view you are coming from and perhaps the angle that people should be taking might have to be, be a friend no matter what their difficulty, as supposed to, be their friend because it will help them recover because although recovery is possible with some it isn’t so straightforward to others. I think the idea of recovery is emphasised a lot because they might want to make mental health problems seem lighter (if that makes sense, like an ongoing difficulty could be perceive troublesome whereas something that can be cured seems a bit easier to take on for people who don’t understand). It’s compares to physical health and maybe we should be comparing it in ways such as, you could have something like diabetes which is long term something people struggle with for all their life or like a cold, comes and goes or fracture, something significant throws you overboard but you overcome it. Maybe that kind of comparison would help the public recognise the depth and range. That would mean that people recognise it’s different but continue to be supportive just as you would to a friend who’s got diabetes?

    • I agree, because I often use diabetes as a comparison (partly because Mr Blogger has it). It is a disease that has a genetic component – as many MH issues do – but can be to some extent managed through behaviour and medication, although some people get it more seriously than others whatever they do. No one expects Mr B to ever “recover” from diabetes, but nor do they blame him for that (even though he eats too many biscuits).

  16. tigtigs says:

    Your post really resonates with me. I have had severe depression for about 13 years now and only recently did I get down to a discussion with my psychiatrist (who is excellent) that we have probably reached the end of the road re meds………..though who knows what might be developed one day? Anyway to accept myself as being sometimes very depressed and sometimes not, to accept the highs and lows and know that no, a day will not be coming when I am completely depression/mood swing free is somehow, in a way, liberating to me. Your comparison with diabetes is excellent, in fact my partner has it too and the difference in how we are treated……..well I’m sure you know.

    Keep up the good work, I love your posts!

    Jenny

  17. Sam Candour says:

    Reblogged this on Delusions Of Candour and commented:
    This is a great post and this discussion definitely needs to happen within mental health services.

  18. Alex Dale says:

    Interesting and candidly written, as always.

    This part resonated with me: “Most people will make a full recovery,” with a swift, “But even if they don’t, they still have skills and talents and value, and we shouldn’t waste that.” Sometimes doing so feels uncomfortable; even though I’m still advancing a recovery narrative, just one with a different view of recovery, that is more complex. It has some jagged edges, so it may be more difficult for the general public to swallow.

    I can’t help but feel the Tory agenda had skewed the perception of the general public into thinking that all mentally ill want to, can, and are fully capable of working. Taking into account the expansive job market for work naive mentally ill people (slave labour in Poundland) it’s not surprising that there is a less than inclusive attitude in the workforce. We live in a morally bereft, back scratching society.. When people have obvious “weaknesses” such as being mentally ill, then their talents become more redeeming features rather than main attributes that make them suitable for a job.

    Labels can be stigmatising in themselves – they don’t fully encompass the range of experience a person may have, and discount the individual as a whole. They are inherently detrimental to a lot of people’s self esteem and ability to function.

  19. Pingback: A bitter pill to swallow… | quietcalliope

  20. Pingback: Morag The Geek | The problem with sanitised depictions of mental illness

  21. Astrid says:

    This is a very thoughtful post. I find that the idea of full recovery as the norm for mental health sufferers discriminates against those who can’t return to the workforce. It’s not like I’m scary just because I can’t work.

  22. With you 100%.
    Even if you CAN return to work, it doesn’t mean you feel recovered or at all normal. most of the time is spent covering up or trying to fit in with the normal world. Not good…and definitely NOT conducive to staying sane.

  23. I agree with you. We’ve gone from living in shame of mental illness to now attributing every crisis and every ailment to it and as if it’s something easy to solve. “It’s not guns that are the problem. We need more mental health programs!” spoken by the very people who dismantled them all 10 years ago.

    • 10 years ago? that was just the most recent sslvo. it started under reagsn and kennedy regimes. it was spoze yo take care of itself at the local level. in my locsl area more dports arena and public art on the thoutoughfare get better funding attention!

  24. I live with manic depression and PTSD from childhood sexual abuse. I’m’ open about the first two with folks in my church, but I don’t think they are ready for Daddy… This is an almost perfect post. I never lead with mental disorders because they don’t define me…except when they do. I was not diagnosed until 50, so I have had eight years to look back. Sure, meds help me keep level, but I still have my gifts – music, poetry, blogging… but I also say, “This is all me. Manic depression, mostly depressed, and PTSD have helped me encourage others to simply go to a therapist and talk. The whole “nothing so be scared of” campaign, along with gun violence “guns in the hands of crazy people” bit, discouraging but there is still room for education. Amy, Madison

  25. vankard says:

    Reblogged this on vankard and commented:
    Incredible honesty. How refreshing….

  26. Thank you for this very important post! I am finding that we all have to recover from something in our lives. However, I also think recovery is something we must practice, pretty much daily, so I’m not sure there is a recovered… Thank you again!

  27. Wow thank you so much for putting into words how i feel, I have had mental health problems for over 10 years, i have lost jobs because of this, but thankfully I have had a job for the last 7 years. It’s true that some people do make a good recovery, but like you said some do not, i still have to take pills, but that is mainly because I still suffer with insomnia, also some depression, in the last few months I have started a blog of short stories which helps my boredom and my dyslexia, sometimes I still have times of high excitement followed by low times, but i can now cope with these feelings. Thank you again for what you wrote it helped a lot to know i am not alone with how i feel xx

  28. Another thing that bothers me is that people expect others to be “cured” of mental illnesses in some ridiculously short amount of time. Two months of counseling and a perscription and people think you should be good to go. Years of abuse, or PTSD, or even schizophrenia, and a couple sessions and a few pills are all you are supposedly going to need. If you aren’t ready after that to be an exemplary member of the community and workforce it’s yet something else “wrong” with you. Family/friends are particularly bad about this, because they do just enough reading up on the subject to hear about best case scenarios, and assume that will be you.

    • I have had to try to explain to people that even purely on the med front, making changes is like trying to turn a tanker ship. 6-8 weeks to taper up from a starting dose to see if you are responding to the medication and tolerating the side effects. If you’re not, weeks of either coming off med 1, or cross-tapering with med 2. Then another 6-8 weeks to see if you are responding; if you’re responding a bit, weeks and weeks more of dose tweaking to try and find the “sweet spot”. Before you know it, six months of your life have passed! And therapy is an even longer-term proposition.

      • Yep! You don’t go from addiction, a suicide attempt, or long-term trauma or imbalance to “all better” in a few months, even if the correct drug and dose is thrown at a purely chemical problem first thing. If it took years to get to this point, it’s probably going to take a proportionate amount of work and time to get elsewhere. It will get get ‘better’, but it’s a lifelong process, not a papercut. More like growing new limbs and then learning to walk and write your name again ^^

  29. nicciattfield says:

    I think it is perhaps the medical narrative of illness which has been taken on by psychology which perpetuates this I was well then I became ill and I got better, restitution type narrative. I remember looking at addiction stories a few years back, through the eyes of Arthur Frank’s wounded story teller, who spoke of the change in self illness stories bring, in comparison to the hero’s journey. All the strenght to you. I had anxiety and the self doubt which came wtih it. I learned to use it to question, and to chanel it, but I do have to live with it.

  30. Kylie says:

    I definitely think mental illness should, in many cases, be seen as a chronic condition that takes ongoing management, similar to diabetes.

    • Yes, and what I don’t get is that if you have diabetes (and this is based on my partner’s recent diagnosis) you are *encouraged* to think right away that this will be a lifelong illness, yet need not be experienced as a life sentence if well-managed with drugs and lifestyle changes. My partner even got an extensive course on self-management on the NHS. I assume people shy away from saying this to people with mental illnesses, in case it robs them of hope. Well, there’s nothing like being led to believe you’ll get a full recovery then slowly realising this isn’t true to give you a real knock…!

  31. christinajavete says:

    I loved this post! As a student in the mental health field, and someone who suffers from anxiety and depression, I can relate in that I might never get rid of my conditions. Just like any chronic disease, I can relapse back into deeper sadness and higher anxiety levels due to life stressors.
    I’m at a point where I’m stable and doing well, but I know that it is my genes and my chronic illness that keep me from being 100% completely better for the rest of my life. I’m so glad you wrote a post like this so that people can understand both.

  32. Irene Suwarno says:

    Great post

  33. Jessica says:

    Thank you for this. I truly believe that “the public” may see my illness–a diagnosis of Bipolar II coming just last December–as a “temporary setback” of sorts. But I, and many others such as yourself, understand that there is no “cure” and no true “recovered” state. It will always be there, always be a part of who I am and what I consist of. It does not define me, but it is important to recognize.

    Thank you for putting this thought and feeling into words so eloquently. I truly appreciate it.

  34. slbang00 says:

    I applaud you for your honesty and writing ability. Thank you.

  35. slbang00 says:

    Reblogged this on I need a voice and commented:
    T

  36. Nice, I’m on my recovery road and I feel like I’m in a position to accept my diagnosis because I feel a change in the services around mental illness. I have a story that rides along a roller coaster; maybe that coaster is out of the picture and I’m riding the waves of the ocean, but it was hard to understand what became of my mind and how now it is in limbo of a medicated/self medicated mental health. Beside wanting to move away from the professional view of what my behavior in context is a “impaired” state of well being

    • *oops* … I see that there are different qualities of recovery, and the stigma comes from of the unknown onset of the diagnosis. I can see you are searching for something that is honorably mentioned for us with this hindered lifestyle, I am just waiting for things to ensue better awareness, but I feel I should attest to your thoughts as it would help with how I can recover.

  37. Thank you for sharing your thoughts. I agree that the idea that full recovery is possible for everyone is not always helpful. When I first became unwell medical professionals talked about recovery as though it was something fully attainable and when it became evident I would always have to manage my condition I felt cheated. Now I realise I will never get rid of bipolar I can actually really work towards improving my quality of life and working around it. That has actually meant I am closer to “recovery” than when I believed it would magically disappear.
    We all have mental health just like we all have mental health so why would it make sense to say all people with a mental health condition have the same chance of full recovery? Mental health issues cover such a wide range of conditions and degrees of severity that it seems ridiculous to suggest everyone can have the same outcome.
    I am pleased work is being done to destigmatise mental illness but the idea that we can all have a short illness then go back to how things were just isn’t realistic.

  38. Congratulations on being Freshly Pressed, although from the list of comments, you really didn’t need the boost.

  39. Thank you! I often get tired of the “sunshine enemas” promoted by public campaigns about mental (or even physical) health issues.

  40. Reblogged this on A Modern Ukrainian and commented:
    A Very interesting read. As someone trying to come to grips with my mental health while being in academia, I feel very pressured on both sides. On one hand, pretending that despite my issues, I can keep pace with everyone else, that I can do a million things, and be productive, and, and, and…. And on the other.. when I need to ask for help, I have set myself up as this person who does a million things, and I get shamed into being told I need to do less, that I AM less…. When really I just need some understanding or a simple alteration to the status quo, and I can still do a million things, but I can do them in a way that allows me to breath at the end of the day.

  41. Sarah says:

    nicely said!

  42. Pingback: When movements move on | Graham's Grumbles

  43. rainzj says:

    Finally! I have been subjected to the notion of recovery from mental health professionals. They seem to define it as “managing” symptoms in order to work. If you cannot manage symptoms, you are made to feel like a failure. I am on several drugs to control my anxiety, which all sedate me and leave me unable to focus. Yet without them, I have terrifying bouts of panic. The mind is too complex, and little understood. It cannot recover like a broken ankle. Anyway, thanks for your keen insight, and putting into words a problem which is seldom addressed.

  44. rikkilynn says:

    Sometimes I have even convinced myself that I am “normal,” and that this “normal” is here to stay! Unfortunately, it never does. I suffer from anxiety that goes between manageable and downright debilitating. I have tried hypnosis, therapy, meditation, herbal remedies, teas, etc …and the only thing that brings on a state of total normalness for me is medication. I too, also hate that I am ashamed of it. It is a part of who I am, and therefore means that I am ashamed of the person that I am. It’s a tough struggle!

  45. Yes, I completely agree. If I hadn’t waited over four years to treat my depression it wouldn’t have been as difficult for me to recover as it is.

    • That’s def where I am – I was in denial for about a year before I saw a specialist. Then it was really entrenched 😦

      • #treatmentdelayedistreatmentdenied. whether self delayed or by the system. thus underscoring the bit about “progessive disease” which is more inline with diabetes and less like a broken bone. but remember that broken bones can end careers, can mean less than a return to previous levels of athleticism. and does a stroke victim get told the parslysis will certainly all go away (if you comply hard enough) ?

  46. mlsnead says:

    Your post resonates strongly with me; I am in your boat and the stigma is more that I can live with at times. I just want to be treated like anyone else with a chronic medical condition.

  47. Sarah says:

    I was recently asked to back a fundraising campaign that involved people with bipolar disorder creating video messages of hope for those who have just been recently diagnosed. Upon watching the videos I was horrified, because every single one suggested mental illness was nothing more than an issue that can be cured by taking some medication and going to therapy; once that has been done one should never have another problem. This is a far cry from my experiences, and I think it is incredibly misleading to try to coax people into treatment by telling them there is an “easy fix” to what they’re going through.

    Your post reflects all the thoughts and feelings I had when this came up, I know I couldn’t have said it better myself. Thank you!

    • Thank you! I know some people who are stable for a very long time on meds – and I was one of them! That’s just so far away from being “cured” though. So much more useful to suggest the newly diagnosed learn about their condition and begin to learn to live with it.

  48. Sarah says:

    Reblogged this on bi[polar] curious and commented:
    There has been a post floating around right now that sheds a little light on something I’ve been thinking a lot about lately. Since I couldn’t have said it better myself, I’m pleased to pass this one on. Thanks!

  49. Hi.

    I will state this short and sweet. 🙂

    Your post is great and the topic is even more intriguing.

    I agree with you on the whole post, and surely look forward for your new thoughts. 🙂

    Tina.

  50. riselikeair says:

    Reblogged this on Rise Like Air and commented:
    Looking for simplicity in an illness that is anything but. This is very well written.

  51. blessed800 says:

    Interesting. Having not been too exposed to the culture of “just like everyone else” (or any other for that matter) regarding persons with MI- I am delighted for the push towards simply accepting us quirks and talents alike.

  52. nikeyo says:

    This is an incredible post. Really. From the beginning to end it spoke to me. I also was diagnosed at 13-13, and didn’t end up being treated until my first depression episode and attempt at 25. Now I’m at 27, with my first manic episode earlier this year and being treated as bipolar.

    “. I may be entering a period of remission but I know with absolute certainty that I will relapse at some point, even if I’m 100% treatment compliant.”

    Is a piece of your post that really stuck with me. I only returned back to work a month ago after hospitalization against my will as 5150, and 2 months of 3-days a week 3 hours a day group therapy. I hate that feeling that when I was dc/ed from that, that I’m suddenly 100% all cured, cause I’m not. It’s a daily struggle.

    Thank you for writing this.

  53. aeramoure says:

    Reblogged this on Not So Crazy Talk and commented:
    Yeah, making it seem harmless or belittling it only seeks to misinform the public, which just ends up making things worse. Mental illness is scary and dark, and lightening the horror of it doesn’t work.

  54. Barbara Rath says:

    This is nicely written. I think people are more comfortable when there is a problem with an easy solution. Then everything goes back to ‘normal’. But mental illness is not the flu or a bacterial infection. It is a complex set of changing symptoms that need to be treated and monitored so as to prevent serious set-backs.. Thank you for your excellent synopsis.

  55. I agree with most everyone on this subject. I feel like remission can be achieved but recovery is no guarantee. Meds and therapy cannot always change the chemical makeup of our brains. As someone with bipolar disorder and borderline, I can attest that even when I am in “remission” with no symptoms something is bound to trigger…I just have to prepare and wait. Great post!

    Bringing you love and happiness!
    Mental Parent
    http://www.mentalparent.com/

  56. Scout says:

    You have put something that so many of us seem to be having in our minds into words so well. Will also be reblogging and sharing this. I’ve been trying to explain to people that even though I will ‘recover’ to some extent and for a period of time, bipolar disorder is CHRONIC. It is never going away.

  57. Scout says:

    Reblogged this on Bipolar: Flying too close to the sun and commented:
    Putting into words what so many of us seem to have on our minds.

  58. Amy August says:

    I really enjoyed this post and agree with your view on mental illness recovery.

  59. befree907 says:

    It was difficult growing up with (and still having) a mentally ill mother. More than just the mentally ill person is affected by it, especially in close relationships with people who love each other. It breaks my heart and keeps me up at night thinking about the situation my mom’s condition has put her in, and knowing she will most likely die one day in the same situation. It is extremely difficult to deal with, and a struggle to comprehend. A plea for recovery isn’t just to get someone back to work.

    • Hi Befree, I am so sorry to hear that. It must be so very, very difficult for you. But I was speaking about a very specific recovery discourse in UK media mental health training and media campaigns so I don’t think we’re really talking about the same thing really…? Goodness knows I WANT to recover. Do you honestly think that I don’t?? But I won’t, not in the way this media take on the issue means. Honestly think you have have missed what I was saying here.

  60. mindfulgirl7 says:

    Well said! I think so many people feel and think the same way, but may be afraid to be open about it. I’ve learned so many things from you that I really didn’t understand or realize the meaning of, with that I thank you!

  61. koharjones says:

    As a family physician, I describe mental illness to my patients as chronic disease, like asthma, that may never fully go away, even though it can be very well controlled. With medications, the symptoms go away. With changes in the way we live our lives, the triggers for the symptoms go away. Asthma can be classified as mild intermittent, mild persistent, moderate persistent, severe persistent—different diagnoses depending on how frequently and with what severity symptoms appear. The same is true for mental illness. Medications can help with symptoms. The way we live our lives, the relationships we have, our economic stressors, can change the triggers for our symptoms.
    Chronic mental illnesses, like chronic physical illnesses, can be controlled–but aren’t always.
    The first step for patients to getting diagnosed and treated for any disease, though, is screening for it–and it’s a lot easier for patients to agree to be screened for a disease that can be controlled. Why would anyone ever want to be screened for a disease that may stigmatize them, prevent them from getting insurance, isolate them from others, if they believe there is nothing to be done?
    Mental illness is treatable. Just sometimes the treatments work better than others, and the goal is control, not cure.

    • i advocate law suits for not treating with parity, for having uselessly short courses of tx after which nada. i see it as the only way to “get the mules undivided attention” and stop the insurance industry thinking beyond quarterly bottom lines. in your practice have you had “management” refuse to o.k. blood tests , a part og s vomplete, differential disgnosis? ive seen other providers mention this problem, and be told, just prescribe! and, as a g.p. , are you not allowed to refer to a psychiatrist, just like to other specislists? or is “behavioral” medicine still that much the redheaded stepchild?

  62. tsf36 says:

    I am so glad I saw this. This sums up how I feel. I have major depression and anxiety, my mom had schizophrenia. It’s important to show others that people with mental illness are not to be feared, but it need to be realistic Such a great post!,

  63. PurplesShade says:

    The narrative of “full recovery for all” also leaves no room for those of us who have been struggling with mental health disorders since childhood.
    The first time I went into counseling for being suicidal, I was 7. That sounds extreme, but that’s just the truth; I had been depressed and thinking about ways to die for over a year at that point, which is not at all average for a child that age. (Which is also why my parents took it so seriously and got me into treatment right away) that bout of depression lasted another 15 years. I was into my twenties before I felt, surprisingly, not depressed as a constant state.

    Most treatment not only talks about recovery as “Getting back” to what you once felt, and though as you point out that may not be possible for many people, it also completely erases people like me who have never had “normal” moods, and experiences prior to having ‘abnormal mental health’.
    What can *I* go back to? There is only forward for me, no back. I am happier now than I have ever been in my life before, and at this point I only experience brief bouts of depression. (I don’t think I’ll ever not be a depressive fully, but it’s nice to not be one constantly anymore)
    I have other mental health problems still, like various forms of anxiety; and even the ones I have under control (my OCD and GAD) still cause intrusive thoughts.
    I will never *be* normal, and I do not need to be. My experience, my resilience to keep on living and striving to feel good despite not having any ‘normal’ to know what to seek out, should not be erased.

    • Myrtle says:

      Thank you for writing this – you’ve put into words how I feel. What I find hard is that as I don’t know what ‘normal’ is, I don’t know how far I am from it, or how my experiences/feelings differ from others. So people say things like “oh, everyone struggles to get out of bed in the morning” and I’m left trying to explain how I’m struggling in a way they won’t dismiss.

  64. Pingback: Mental Health on the Internet 22/6/2014 | roseversusblackdog

  65. Thank you for this. I feel like the professionals I see are trying to convince me that I can get “better” or “recover” just when I have started to accept that I have to live with my illness and the near certainty that episodes will continue to happen. It is hard to see/read/hear so much in the media about what I guess must be called full recovery, when you know it doesn’t apply to you. Thanks for tackling a difficult subject.

  66. I think the way the recovery narrative is presented isn’t just harmful in terms of other people’s perceptions. My being sick was a massive problem with my employer at the time, who treated it as a disciplinary issue rather than a managing sickness absence/disability issue. My psychiatrist, CPN, and employment support worker all provided information to my employer based around this recovery narrative and suggested that they look to Time to Change for guidance on supporting an employee with mental health issues.

    This caused two problems.

    Firstly it provided my employer with more ammunition because they’d given me a cup of tea and told me they cared and I still wasn’t better so I must be at fault for the way I was acting rather than it being a product of my illness.

    Secondly, later on, after I’d parted company with that employer, started working somewhere far more supportive, and my condition improved I thought, ‘oh, right, finally, I’ve made it, I’ve recovered. I’m better.’ Which made it all the harder when I got sick again because I hadn’t been taking all the necessary steps to manage my illness. Because nobody had ever told me that it wasn’t ever really going to go away and that I needed to be keep an eye on what it was doing in the background even when it wasn’t causing trouble.

    It’s taken me a long time to come to terms with the fact that I’m not going to have a nice neat recovery story and that I’m going to be dealing with this forever.

  67. anaisecho says:

    Appreciate your viewpoint very much, thank you for sharing. I study health policy and several of my colleagues are very interested in mental health policy–what you wrote is thought provoking and I am thinking about how the dominant narratives of mental illness may shape policy and insurance coverage for treatment..

    • Ah I don’t know – I’m in the UK and all our healthcare is state funded, so I insurance issues don’t impact at all here.

      • Myrtle says:

        It’s heading that way though. And there are plenty of people like me who the CMHT refuse to treat, despite barely coping, so private therapy is the only option. No one talks about us though.

  68. A very profound and coherent argument. Very eloquently put. Thanks for sharing

  69. AM Simpson says:

    I have personally witnesses a miracle of someone diagnosed with an incurable mental illness of the severest kind, who had been hospitalized for years and miracles are real. Never give up never give in. I say this not to trivialize anyone’s condition.

  70. Reblogged this on A Freshly Pressed Nurse and commented:
    Some thoughts on the Mental Health narrative…..Why we still have to medicate what society can’t quite get a grip on…

  71. mentalparent says:

    Great article and very well put. Thank you for sharing.

    https://mentalparent.wordpress.com/

  72. As a relatively newly qualified Healthcare Professional I found the medical professional’s attitude towards mental health appalling. It was more entrenched in fire fighting mini problems that working with the ebb an flow of the human being sat in front of the doctor/nurse/pharmacist. I was asked to provide a lecture on depressive illnesses at my old university in February and pleaded with the health care professionals of the future to understand that they must treat the person as much, if not more, than the “disease” or “condition”, whatever you would like to call it.

    I guess my point is,, while the patient is the one stigmatized and the medication the one blamed for everything, the decision makers are not held accountable if they do not act in best practice for the patient when it comes to mental health.

  73. judygurfein says:

    Interesting insight. We have a lot of success stories for treatment of mental disorders, but even those with the brightest recoveries are often left with lifelong scars. Psychological treatments have come a long way, but there is still room for growth.

  74. kme76 says:

    Reblogged this on Crochet UK and more… and commented:
    I’m learning, I’m living and resilient. I can not thank purplepersuasion enough for voicing this reality.

  75. It feels so GOOD to read this post.
    I too suffer from mental health problems and am NOT recovering. I am a fully compliant patient.
    Sometimes I am able to work (in certain specific settings) and sometimes not.
    I’m good at what I do, I just can’t do it all the time and I cannot predict whethe ror not I’ll have to be in sick-leave in 6 month, 3 weeks or will hardly miss a day for the next two years.
    When I try to get a job, I serve them the “recovery tale”, but I know it’s just pretence, aiming at getting the job.
    I feel so much better when I can say : yes, I have mental health issues; I’ll do whatever is in my power to reduce the risk of a new episode coming, but it is not in my power to eradicate it from occuring again.

  76. savemefrombpd says:

    Sad but true post. Sad in many ways. True in many ways.

    I am one of those that unfortunately doesn’t fit the ‘one time service user’ that I would very much like to be but have VERY LITTLE chance of actually being!

    Yes, I have a personality disorder, I have Borderline Personality Disorder AKA etc etc… And this is by far a one time thing that I will ‘get over’. Oh, how strange that I don’t fit that ‘mould’ too, right?!

    You are absolutely right about the incorrect way of representing people with mental health problems… dare I say that I am seen as peculiar because I’ve been in the ‘system’ for 4 years now — How can that be!? She’s out of work for 3 1/2 years now!? But dare I say that I am actually rather ‘normal’ (!).. in terms of being (unfortunately) a person with mental health problems and a long term user of mental health services.

    And I had to say that!?

    Great post. Simply sad but true. And more…

  77. neuro diver says:

    The more a deviation from what’s considered the norm is stigmatized, the more negatively it ends up impacting the person experiencing it obviously. A narrative such as you speak of would probably help a person deemed mentally ill much more than any pill or therapy could in developing a healthier self image and sense of self. The language of psychiatry needs to be re-established in more positive terms towards mental “illness” as a first step. ( Michel Foucault wrote extensively on this in Madness and Civilization, a very interesting read)

  78. The idea of people in treatment at 50 who were in treatment at 20 strikes me as the epitome of folly. In fact, imagine error without correction. Psychiatry is negative, sure, but psychiatry is a business in which it pays good cash to be negative. Oddly enough, the failure of psychiatry is the success of psychiatry. Schizophrenia and bipolar are words in the psychiatrist’s professional lexicon that resemble, to my way of thinking, frumious and brillig. (See Jabberwocky by Lewis Carroll.) Recovery is not mental health treatment. Recovery is a process. It has a beginning, a middle, and an end. That end is recovered. Where we don’t have recovered. We have the successful failure of psychiatry, and you, me, and everybody else have better things to do with ourselves and our lives than conform to a psychiatric text. As I see it, the recovery narrative works a lot better than any non-recovery non-narrative. Regardless, happy unbirthday to you, too.

    • I was in treatment at 20. I still need it at 40. So there is no reason at all to assume I will not need it at 50. How and why is this “folly”? What the hell else am I supposed to do with a condition that will not go away no matter what I do, think, eat, believe? Last time I believed I was “recovered” and no long mentally ill it led to me failing to noticed the biggest, worst and longest lived episode of my life creeping up on me to destroy my career and my sense of self. The beginnings of my illness are my earliest memories (say, aged 4). The middle of my illness is the entirety of my adult life thus far. If you can show me how the find the end, and what it might look like, I’d be very grateful. Since you can’t, because nobody can, then I’ll thank you to stop implying I could recover if I didn’t want to feed into the business of “psychiatry”. My life recently has been HELL. Absolute hell. Yet you appear to think I would choose that? THAT’S folly.

      • Of course, I can’t answer for you. You can only do that for yourself. I happen to believe in freedom and, specifically, in freedom of choice. The alternative is to believe in determinism, and determinism is something I refuse to believe in. If we determine our own fate, it is self-determined, that is, it is not determined by something or someone else. I leave the philosophy of slaves to overseers. Speaking of “illness” at the age of 4 would be as absurd as speaking of “illness” at the age of 2 when we are all a handful. We are all, generally speaking, a handful from 2 to 6, and beyond. I consider most of this talk about bipolar disorder to be mere propaganda more than anything else. Disease is physical or it is not. A car in your head won’t kill you, but a car on the street sure as heck could. Should your problem be one of prescription drugs, as I feel it often is, in the case of the bipolar diagnostic tag, the most obvious solution would be to taper off prescription drugs. Folly would be to choose hell, surely, but we learn from our mistakes, and we no longer make them. The result of this learning is called WISDOM. Where we don’t learn, you just get additional folly.

    • Myrtle says:

      Going to try and explain this to you, though I doubt you’ll take it on board.
      Firstly, I will point out that PurplePersuasion and I have differing views on medication and the causes of psych disease (as in dis-ease, not at ease). I am fairly anti-meds and mainly in the psychosocial view of how mental disease develops.

      However – THIS DOES NOT EQUATE TO BEING ABLE TO ‘THINK YOURSELF’ HAPPY!! And I fully condone anyone who wishes to punch you in the face should you dismiss their suffering like this.

      Think of it like this: whatever has happened to the person, the mulitple complex intertwining factors that have combined to make them break, cannot be reversed. We cannot go back in time and make it un-happen. All we can do is try to understand what has gone wrong and find ways to help.

      A friend of mine suffered a broken leg, which led to complications and a lot of surgery. He cannot ‘un-break’ his leg. It will never be the same as it was before; he can only make the best of it. On days when it hurts a lot he knows he has to take it easy to prevent more pain and disablement. No-one expects him to just get up and go for a run, to ‘think’ he’s ok and just be fine. So why expect it from a psychological injury?

      I agree there is a level of ‘needing to conform’ in psychiatry/psych diagnosis, but that is not the same as suffering. I don’t want treatment/therapy in order to ‘conform’, I want it in order to FEEL BETTER. In fact that’s kind of what PurplePersuasion is saying – psychs are now focused on getting you to conform and rejoin the consumerist, capitalist machine. Actually what people need is to be fully wholly accepted as themselves, and able to live their life in the best way possible despite what others may see as ‘limitations’.

      It is YOU who is expecting us to conform, if having mental struggles makes us unworthy or not trying hard enough in your view!

  79. Timothy says:

    Great post! I covered the same theme as it plays out in “radical” mental health land over at The Icarus Project.http://www.theicarusproject.net/article/a-garden-with-forking-paths-pushing-back-against-a-new-fundamentalism-recovery-and-radical-mental-health

  80. Alex Dale says:

    I would like to add that as a person diagnosed with paranoid schizophrenia “with affect” – basically intermittent psychosis with an unrelenting mood disorder, and also being someone who is largely resistant to treatment (antipsychotics, I am particularly sensitive to, and they don’t really work that well).. I’m now seen as being a totally capable person, and constantly pilloried for not making myself in every aspect like everyone else – e.g having a job. However, what people seem to fail to realise is that the problems I have are incredibly pervasive and debilitating. I feel that it is to my credit I have managed my health to some degree without drugs, but by not engaging with “treatment” I’m suddenly deemed completely normal and capable again.

    I have days where my depression and anxiety is literally unbearable, and I hear voices incessantly. I’ve had a lot of breakdowns following episodes of prolonged mania where I’ve bankrupted myself, unwittingly driven wedges between myself and others, and then had to pick myself up. I receive “advice” from “professionals” that amounts to nothing more than “just carrying on doing stuff myself” and looking for work and education – as if that would suddenly make me sit up, after 8 years with mental health issues and say “Oh yeah! all i needed was a job!, stupid me!” – as if there is actually no issues or underlying problems. It’s very offensive and upsetting IMO.

    Nobody gives me any useful advice or shows any true compassion and understanding. I’m literally fed up with mental health services and today I feel particularly angry about their patronising manner and constant pushing for me to try harder. I always thought that I expected too much of them, but now I’m beginning to see it’s totally the other way round. I’ve done all I can and reached a plateau with my progress. I guess I will just have to continue stuff as is, and I have resigned myself to accepting all the limitations in other people’s understanding and perspectives. The only way forward is to learn the best way that you can with keeping yourself at a level of wellness that is appropriate for YOU. Unfortunately, our society wheedles out people who don’t seem to be “making enough of an effort” and forces their own recovery agenda on you, so it exacerbates the isolation and depression really.

    • Myrtle says:

      I totally understand. Am shocked though as I thought this only happened to me cos of diagnosis. What a bunch of idiots they are – dangerous idiots though.
      Take care and remember who’s the sane ones really… x

  81. weirdaweso3e says:

    Thanks so much for posting this. I have Borderline Personality Disorder, Anxiety, Anorexia and Bulimia, and am a recovering meth addict. Sometimes I feel pretty crappy because I have episodes at work where life just gets so chaotic that I break down. People need to understand that it’s a process, and although I am trying my hardest, sometimes things come crashing down and I’m an emotional mess. With my drug addiction, I have been clean for a year next month but I always say I’m a recovering addict not recovered, because I know that all it would take would be to be offered it and I would certainly relapse. Same thing with my eating disorders, I have gone years without any of it and then it starts up again. Society’s pressure to recover fully and fast is taxing on the brain, and when you don’t you feel hopeless. Thank you so much again for talking about this because some of us will never recover fully from some things and there needs to be an understanding and empathy to this fact.

  82. Reblogged this on Conversations I Wish I Had and commented:
    Many good arguments made. Just wish voices like this one were more loud to educate people about mental illnesses. Still too much of a taboo in our society.

  83. Amy says:

    Great post. From the perspective of a clinician (albeit a relatively inexperienced one), I think we do try to push the recovery narrative too far. I’ve had clients who have been in therapy and med management for years, frustrated that they haven’t been “cured” despite objectively doing everything right. The second they recognize the long-term, pervasiveness of their condition and the setbacks that they may have, the better equipped they become to deal with it, and maybe have a “normal” life (whatever that means to them).

  84. Pingback: Morag The Geek | 2013 response from Dept. of Health re MH crisis care

  85. I love reading thoughtful, original, introspective pieces on mental illness, like this one. Unfortunately–at least in the US–people who think as you do, have an existence like you do, have been shunned, marginalized and even attacked by the SAMHSA-funded mental health/consumer industry and NAMI for not sticking to the politically correct narrative. The lack of concern has meant there is no organization advocating for the most seriously ill. Congrats to you on a great column.

  86. flat-footed-runner says:

    I had my 2nd breakdown 2.5 years ago. I’m 33, I’ve got Chronic depression and haven’t worked since. Talking about long term goals with my OT (I can’t think of any beyond getting back to work and earning a wage enough for a little holiday a year) brought up the idea of psychometric testing and I suggested maybe a trip to a careers office would be helpful. I went yesterday (big, positive step for me) to have it confirmed that I’m really not ready to even think about work. He (the nicest, most MH educated careers advisor in the country) recommended I take the time to adjust to my new ‘normal’- do things purely out of enjoyment and then come back when I feel any better. This is what my OT had been talking about but I wasn’t quite ‘getting’.

    I feel I’m in a tug of war. I’m trying not to judge myself by other’s values and to adjust mine to realistic although not pessimistic levels. I do need the time to rest and slowly get back out into the world. Every year, I think, “In a year’s time, I’ll be well enough to start looking for a job…”
    But as much as I’m not to concern myself with what other people think, it’s hard to ignore the constant talk of ‘Benefits Scroungers’, the emphasis on getting the long term ill back to work ASAP, the annual stress of the ESA assessment (the wait for the decision makes me idealise suicide) because I feel like I’m going to be called a fraud and the fight involved to appeal etc. Old workmates asking if I’m looking for work yet. I’ve had a younger family member who I was staying with when homeless repeatedly hit me, calling me ‘lazy’ while ridiculing my fatigue daily. My own mother who is 99.9% a gem tells me she doesn’t ‘get’ what causes the fatigue or why I don’t get to the gym when I say I want to. Nor that what she’s said is like a bucket of cold water.

    And every time I stop and wonder if I’m perhaps faking things to myself, being too precious, reality tells me something different. After yesterday’s career chat, I came home wiped out for the rest of the day. Then the evening. This morning I only got up because the dog was scratching at my face because he wanted to play.My brain feels like it’s been trampled on my a herd of cows and I’m getting thoughts about how I want to be put down. (I’ve booked to meet mum to pick up my baby niece from nursery in a couple of hours as a distraction so don’t worry about me doing anything daft). I rarely follow a blog but I pressed the follow button before I’d even got to the comments section. Thank you 🙂

  87. blognwriter says:

    I’m so glad CAMHS was able to help your son. Unfortunately I had a very different experience with my son. I had taken him to CAMHS for a number of years for behavior issues, which turned out to be Autism. By the time he was diagnosed he was almost 14 and completely missed out on any early intervention. By that stage I’d been seeking help for 11 years. It would have saved us all a lot of heartache if they got it right, many years before.

  88. Criticise away! There really IS so much to criticise when it comes to this stuff.

    Challenging behaviour is better described as reactive behaviour, because people are reacting to an environment that isn’t meeting their needs. So you’re right to point out that services are the ones slapping this label on behaviour (which is actually communication, if people had the eyes to see and the ears to hear!) Services; services that people with mental health issues “should” be grateful for, are doing this TO people, and if service users express discontent, it is ostensibly due to their illness and not the fact that their “reactive communication” is being described as “challenging behaviour”!

    And – like you say – the “challenging behaviour” (AKA reactive communication) is glossed over by aforementioned services in an attempt to humanise people who are apparently not human if they communicate in reaction to the fucked up world around them! This movement is then supposed to be met with gratitude, and if it’s not, then the already dehumanised person *obviously* has undesirable issues and ‘deserves’ to be further dehumanised (or pathologised, etc)!

    Argh!!!!!!

  89. So Sad says:

    “My son is having his first significant experience of anxiety and low mood and I am very pleased that my local CAMHS wants to give him the skills via CBT to manage his issues now,”

    Oh that is so sad, Mommy got brainwashed by psychiatry and now the little boy will be too. So sad. I’m glad I’m not your son. I’m glad my mother didn’t medicalize my low mood. So sad. Hopefully he can get away from your silly beliefs when he grows up.

    • What an awful person you must be to say that. What a total and utter lack of empathy and humanity. I’m going to leave it on here so other people can see your unpleasantness for themselves, but I’m NOT going to get into a dialogue because I have never yet met an anti-psychiatry (and no, don’t you DARE pretend you are “critical”, critical people are able to explore nuance and to think, rather than simply cling slavishly to an ideological position) proponent who wasn’t unpleasantly insistent that anyone who doesn’t agree with them is “silly”, needs to “wake up” etc. You have it so back to front, it’s not even funny. I thought like you when I was a young, immature adult with little experience of the world and a couple of bad experiences of psychiatry. I’M the one who’s wised up, grown up, become able to see things as less black and white, but your sort refuse to accept that. Please don’t post here again. Your comments won’t be published anyway.

      • Myrtle says:

        Hello *waves* I’m antipsychiatry but also nice and have a brain/the ability to think!
        And CBT isn’t psychiatry anyway, it’s psychology. Weirdly enough the reasons I dislike CBT are precisely the reasons it’s probably good in this context – a sort of ‘psychological maintenance’ rather than a big, deep overhaul.
        Ffs, it’s not like you’ve got him dosed up on meds asap! So it’s not even ‘medicalising’.
        Ah well.

      • Thanks, Myrtle! Nothing personal meant! I am afraid that although I was once anti psychiatry myself I have had far, far too many encounters like that one for me to even try to engage with the segment of the community. So, so tired now of being told what I must think, what I must believe, what I mustn’t do, that all meds and doctors and hospitals are all equally bad. The way in which these views have been put across have in fact only driven me yet further away from my original position, so, well done those people if their intention was to get me to think more like them! I don’t respond well to being commanded. If more people were like you, THEN I would have a debate, because it would be a proper debate. As things stand – meh, I have better things to do with my life!

  90. Reblogged this on lifeguardneeded and commented:
    Well written and so accurate

  91. Thank for this it’s some light for those un-medicated folks out there too afraid to ask questions.

  92. blackquacky says:

    This is absolutely spot on, I have written something similar on my own blog although it is written from an Irish perspective and focuses on the medias input and is not nearly as articulately put together. This is so fantastic, thank you.

    http://blackquacky.wordpress.com/2014/01/10/the-damage-of-the-temporary-depression-campaign/

  93. Helen Lear says:

    Great post.
    I get very frustrated at the “getting back to work” ethos, because obviously in our capitalist society if you can’t return to the workplace then you have no value, you are a drain. Why should we all be so “normal” anyway?

    • Yes! We have disabilities we can’t change – yet we’re expected to sort ourselves and go back to work. Why is that workplaces don’t have to change, to be more accommodating?

      • Helen Lear says:

        I know there are certain things expected of a workplace when it comes to helping people with disabilities within the workplace, however I can’t help but feel it’s often done grudgingly. I felt I was being inconvenient when I asked for a wrist support and leg rest!

    • Yes! We have disabilities we can’t change – yet we’re expected to sort ourselves and go back to work. Why is that workplaces don’t have to change, to be more accommodating?

  94. Reblogged this on Purple Headspace and commented:
    What a great post, and agree so much about having skills / experience to offer even if we are not ‘cured’. Mental Illness is not a terminal illness unless we want it to be. We can map out a life for ourselves, it just may not be on the path we were on before. As someone who is fighting for a diagnosis for understanding and access to the correct medication, I have come to realise my path has changed somewhat, but it’s still there, I just don’t know where it will lead yet! Bring it on!!

  95. Fantastic post, have reblogged it.. to my colour sharing blog!
    I’m in the process of fighting for a diagnosis and medication other than anti-d’s. Well done on fighting so hard and achieving so much.

  96. It’s a much grander story to step out and say, “Look what I have been through, and everything’s fine now.” Clap, clap, clap. The view from the other side, where you can safely label that experience as not-me. Once-me, past-me, but no-longer-me….that is a safe story to tell.

    But the story of being in it, of not knowing how to get out, of fearing/knowing this will be a lifelong battle to fight…unless and until THAT is a safe story to tell, people will continue to hide.

  97. Very well put. And it’s nice to know sometimes that we’re not alone in this crazy journey. Best wishes 🙂

  98. Ma Belle says:

    I completely agree. The aim should be for societal acceptance, whether or not ‘complete recovery’ is achieved, or achievable. By focusing solely on those who do recover, we run the risk of marginalizing even more those whose conditions are chronic.

  99. Thank you.
    Well said. Will be re blogging this on The Social Work Archives.

  100. Pingback: Some thoughts about ‘recovery’ in theory and practice « zedkat

  101. Reblogged this on Deep Blue Lips and commented:
    I agree with a lot of this post. However, I also believe we can create a meaningful life, with or without symptoms…

  102. Susan says:

    I totally agree! I have Bipolar and Anxiety. I had “remissions”, but they are always short lived. This is a life long battle. I’ve embraced it as best I can. I use it to help others. I’m just along for the ride…a reluctantly obedient host to this mental illness. There are some positives, but oh those negatives. I would like to reblog this my blog, bravelybipolar. Very well written. Thank you!

  103. Susan says:

    Reblogged this on BravelyBipolar and commented:
    Wonderful perspective on this roller coaster I call mental illness.

  104. I was outraged when a psychiatrist told me that I needed to accept that I had an illness and find a way to live with it. He couldn’t ‘wave a magic wand’ to cure me, he said, only help find me a decent medication to temper the effects of it. I felt dismissed, fobbed off and I kicked a lot of stones and ranted silently to myself all the way home. But, though he may have been insensitive, he was right, and it was the most honest thing to say. No amount of CBT or cups of tea will make me not-bipolar-anymore. MH charities do a great job, but we have to be careful that we don’t end up somebody’s good deed for the day – if I’m in a bad way then of course a text message is nice, but unless you’re prepared to gamble on a reply at 4am when I’m going crackers with insomnia then it might be a bad call 🙂

  105. jackie says:

    ” [T]he issue should not be shoehorning us into a recovery that makes us fit for work again, but building enabling workplaces that support those of us for whom mental illness is a lifelong disability…”

absolutely! Am sick (literally) of being expected to fit into a world that doesn’t understand / like / want me; the public needs to be more aware of connection between ‘social’ and health issues instead of being ‘protected’ by lack of honest info about mental disorders that affect their community / all of our lives. 



  106. Pingback: The green zone: how “recovered” do I want to be? | purplepersuasion

  107. Thank you for this wonderful post. Like physical illness, not all mental illness is the same. And I’m not really big on the “we’re just like everybody else!” approach to destigmatization, probably because even without my diagnosis I fail at just like everybody else. With flying colors. How about “not exactly like you but still deserving of respect and human rights?” That philosophy would go a lot further if we applied it more often, and not just when dealing with the mentally ill!!!!

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s