On seeking help

At twelve, I had a problem. Something was wrong with me. Something had descended upon me, out of the blue summer sky. In an instant I felt dreadful, weighed down, sick with something I couldn’t identify, that I felt in my body yet somehow knew to be of my mind. After a few days of carrying that weight around, I needed information. Instead of spending break with my friends I went up to the school library and selected a book on teenage health. I pulled out a few others, too, and spread them around; I didn’t want anyone to see what I was looking at. The book had a chapter on the mind with a checklist for something called “depression”. I ran my finger down the page, checking off symptoms. Yes. Yes, yes!

At the bottom of the page there was a statement I found very comforting. I don’t remember the exact wording, but it went something like this: depression is a real illness. It is not your fault and it is treatable. Speak to your parents or a doctor to get help. On reading it I felt weak with relief. It was real! The thing I didn’t have a name for, the thing I couldn’t describe was real and there was help available!

I took that book very much at its word. Perhaps as a result, where the topic of help for mental illness is concerned, I am a slow learner.

The first person I asked for help was my mum. “You’re depressed?” she said. “You father’s depressed. Everyone’s depressed!” She sounded overwhelmed, frustrated. I was shocked to hear that my father had depression. I’d no idea, and now that I knew my own problems seemed of little significance. I vowed to say no more about it, only I kept on having periods where I was depressed (I didn’t see my “funny” or “giddy” spells as a problem for many years to come) and it showed.

The next person I asked was a GP. I was told that at 13 – by which point I was already considering suicide – that it was normal for teens to be moody, but that I should see a counsellor. I didn’t like the way she always asked me how things “made me feel”. She didn’t listen when I tried to tell her that it wasn’t as simple as that, that sometimes everything would be awful but I would feel great for no reason, and vice versa. I saw another GP at 15, and was told it was all about my menstrual cycle, which didn’t seem right either. At 17 I saw a third GP, who prescribed beta-blockers and left me to it.

At 19, at university, I finally found a practice nurse and GP who listened. I described my experiences and they gently suggested that I might have manic depression and should see a psychiatrist. I was hugely relieved that someone was taking me seriously and I would finally get to see a specialist, someone who could really help me. I knew many people would be horrified or ashamed to be told they should see a psychiatrist, but I saw it positively. I wanted help, you see.

The psychiatrist sneered at me. He accused me of lying about my symptoms, of dropping red herrings into the conversation to mislead him. He insinuated that I drank too much (I was teetotal). He said that he didn’t think my fiancée was an acceptable partner for me. He stated that he “did not believe” in diagnoses. In order to flush out my lies about having “up” periods, he sent me off with a box of fluoxetine to see if I would go “as high as a kite”. I did, and yet he still refused to believe me. He twisted my words until I hardly understood the conversation any more and was almost screaming with frustration.

The experience was a profound shock. Discovering that the help available was worse than no help left me feeling more hopeless and despairing than ever. With the assistance of my course tutor I complained and was assigned a different psychiatrist, but by then I had lost trust in the system. Those two awful appointments were all it took. The new guy was nicer, and he did give me a diagnosis – bipolar, the new name for manic depression – but he offered only one course of action, a prescription for lithium. There was no conversation about what my diagnosis might mean for my life. There was no discussion of any other treatment options. Things weren’t as bad as with the first consultant, but I still wasn’t sure this help was actually…helpful. Scared of the litany of risks associated with lithium and wary by now of psychiatrists in general, I nodded and smiled then walked out of the door and never returned.

Next there was the emergency duty psychiatrist who told me she couldn’t admit me when actively suicidal, as I was the wrong type of person for her ward.

After that, there was the counsellor who was horrified by my manic antics, and showed it.

There was the Health Visitor who dismissed my high score on the Edinburgh Postnatal Depression Scale as being a result of my being “very self-aware”.

The parenting helpline volunteer who listened to my account of severe postnatal depression, a newborn with colic and a toddler with behavioural problems, and responded, “What did you think it would be like? Little House on the Prairie?”

There was the medical ward nurse who jeered at me as I cried in my hospital bed following an overdose.

The week after that overdose a Community Psychiatric Nurse came to my home. She asked me what I wanted and tutted when I didn’t know (how could I? I’d never met a CPN before). She said that I needed to understand hers was a service for people with serious mental health problems, so she wouldn’t be coming again.

There was the consultant psychiatrist who never once looked up from my notes and never once tried to progress things further than GP prescribing.

A clinical psychologist took me very seriously and made a recommendation I should receive therapy, but the team met and removed me from the waiting list without telling me.

There was the consultant psychiatrist who seemed nice and friendly but who changed my diagnosis without telling me, so I had to learn it from a copy of the letter from my GP.

There was the emergency duty registrar who kept answering her iPhone while I tried to explain my suicidal mixed mood and got my story all muddled.

Most recently, there has been the disappointment of the service offered by my Home Treatment Team, including another diagnosis-fiddler of a consultant and series of ever-changing nurses.

On every occasion I have engaged open-heartedly. Optimistically even, despite the fact that I am generally a glass-half-empty person. It seems that no matter what my experience is, I still cling to that belief that mental illnesses are real illnesses, that they are not my fault, and there is help out there. Every disappointment brings fresh hurt.

Why am I telling you this? Because today another celebrity with a mental illness (bipolar, no less) is reported as having taken his own life. In the surge of responses, people suffering from depression or having suicidal thoughts are urged to talk to someone. I’ve seen tweets going to so far as to offer assurance that someone will listen. As someone who’s frequently been suicidal, and as a Mental Health First Aid instructor, I would most certainly endorse the talk to someone message. But we need to be very careful about managing people’s expectations that help is available. I am one of the fortunate ones. I have a diagnosis. That diagnosis is considered serious enough that I have access to secondary care specialist psychiatric services. The vast majority of people who experience mental distress receive none of this interest from services, yet it still took me until I was 37 years of age to get help that actually…helped.

Yes, people can phone helplines. Yes, they can chat to peers online. But what then? What then for the person who doesn’t fit services’ criteria? What then for the person living in area where the appropriate service has been cut? What then for the person whose GP doesn’t believe them and won’t make a referral? What then for the person who waits months to see a psychologist or a psychiatrist and finds that they are unhelpful or oppressive, or their suggestions trite? These things happen to people every day.

I want people in distress or despair to talk. But who will be listening?




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
This entry was posted in Activism, Mental health, Mental health services, Politics and current affairs and tagged , , , , , , , , , . Bookmark the permalink.

39 Responses to On seeking help

  1. You are so right. Your experiences are hauntingly similar to the first 5 or 6 years I tried to get help. I was also very young with a psychiatrist who mismanaged my medication and didn’t listen. People wonder why more and more teens are shooting their peers in classrooms, and I could go on and on about the lack of care and adequate services available to adults, especially those living below the poverty line, which is a growing number in this economy. I wish there were easier answers.

  2. CardTherapy says:

    What a horrible history Charlotte, and from supposed health care professionals. I’m so sorry about your experience. Thank goodness you have found the strength to become the person you are now, and all the more caring and compassionate towards others in the same boat. Yes people need to talk, open up, ask for help, and if they come across barriers unfortunately they just have to keep fighting their own corner.

  3. nutterbythesea says:

    After two disasterous bouts of ‘in house’ GP counselling I’ve been told I’m very self-aware and also that I don’t fit into their boxes. My GP’s answer has been to recommend I take more counselling and carry on taking the anti-depressants. No one will listen to me when I say I think I may be bipolar even though they acknowledge I’m self-aware. I can no longer access a CPN or the Community Mental Health team as they’ve changed how they refer in this area and that’s ‘for dire emergencies only’. This bout of depression has lasted five and a half years so far but the GP doesn’t want to know about my crazy periods in between. This is my sixth different type of anti-depressant and they just make me virtually catatonic. I will tackle the GP again but I have to feel strong enough to fight my corner again. I think it’d be easier for my doctor if I actually did jump off something and then they’d know for sure I was in crisis. It’s crazy.

    Sorry for the whinge but I find your posts so helpful, they give me hope and help me to remember that it’s not just me.

    • (((hugs))) I wish it WERE just me! But I worry for every person I know who enters some form of treatment for the first time and for everyone who falls into cracks between what primary care can cope with and what secondary care can provide 😦

    • I am horrified to hear of the experiences some people have had in getting appropriate care. I thought I had problems, but it was a cakewalk compared with this. If you are lucky enough to have just one person in your life who you can rely on, I would strongly recommend taking them with you to appointments and insist they are present. They can help you get your story correct when you are too befuddled or distressed to remember things or put them in the right order and they can help advocate for you, ask the right questions, remember the answers, and just stand for you when it seems too much for you to do it yourself. At my worst, I could not have negotiated the healthcare system without my husband, but I realise I am extremely lucky to have such a person.

      • But I don’t HAVE any problems remembering things and communicating things (unless I’m so ill I am close to hospitalisation on which case my partner, who is MH professional himself, comes with me). 95% of the time that is SO not the problem. Kind of makes me laugh a bit – if you read around my blog or Twitter you will see that I am a blisteringly assertive self-advocate (take a look at this post for example https://purplepersuasion.wordpress.com/2014/04/06/the-adjustment-bureau-model-of-psychiatry-no-thanks/) and I’m constantly encouraging Twitter friends not to put with crap from services, to complain, to ask for a second opinion, to state their needs and expect to have them filled. And as you know I am prolific blogger, so you can see that I am plenty good at analysing and describing things, often using metaphor to help people who’ve not had similar experiences to understand what I am going through. No, you see the problem is that no matter how well I communicate most, not all but most, professionals haven’t listened. In fact, they have used my ability to communicate as proof that I have “insight” and don’t need help – that’s what the Health Visitor meant when she said I was “so self-aware”. Over my lifetime, it hasn’t mattered how well and honestly I have communicated, they still…haven’t…listened.

  4. makeshiftfrenzy says:

    I have gone through the same thing. From the psychiatrist who had me decide what dosage to take, and the other one who didn’t believe if was having problems and told me I needed to quit acting like a teenager by cutting myself. Luckily I eventually found a psychologist and psychiatrist who are pretty decent. It also took me many years. Mental health care is not a cure all for sure.

  5. makeshiftfrenzy says:

    Reblogged this on makeshiftfrenzy and commented:
    She makes many good points about seeking treatment. It’s not always what you think it’s going to be.

  6. Thank you so much for sharing this. I’m sorry you had to go through all of that before you finally found a good listener who was also genuinely helpful. Mental illnesses are real illnesses and they deserve to be treated as such with practitioners who are diligent and respectful.

  7. Keith Straughan says:

    What a powerful post Charlotte and what dreadful experiences you’ve had to endure. Fortunately I have had excellent experiences throughout my many interactions with mental health professional and cannot rate them highly enough. But I recognise your experiences in the stories of my friends and I feel for you all. You’re so right in pointing out that our provision of mental health services needs to change. Your own contribution to making this known is greatly to be welcomed and much admired. Thank you. You inspire me to talk more openly about my experiences. Perhaps this growing groundswell of reporting of lived experiences will make an impact on health planners. I hope so. Please keep up your good work.

  8. Oh Charlotte xxx. My story is complicated, starts early on, but has been rapidly gaining momentum over the last few years – but I have Borderline. Over the last few years my “care team” have let me down to the degree that it has been damaging, with sometimes my leaving sessions traumatised or dissociated. But I kept going back, I kept hoping it’s going to improve, that maybe I’ve misunderstood… Until recently, huge trauma – No more, this isn’t right, I’m going to fight this. I hope I have the strength…
    I, too, worry about what to tell people when I hear they’re in distress… How can I reassure them help is out there when time and again I’ve been let down?

  9. Well said, Charlotte.

    Have had some very similar experiences, as have too many others.

    After being diagnosed with Dissociative Identity Disorder [which I’m beginning to really resent having to pay hundreds of pounds I didn’t have for], it has been actively reinforced that “we don’t deal with people like you” and “we don’t accept the validity of Dissociative Disorders” from third sector orgs and of course the good old NHS. In the state of utter crisis immediately after diagnosis, a “specialist MH nurse ” on NHS 24 asked how to spell it.

    Thankfully, we are able to access private therapy. However, they are limited regarding crisis support.

    Exploiting the suicide of a famous person [again] is cruel on many levels but hopefully the risk does pay off for those who are being encouraged to seek support .

    *jumbled words – jumbled brain* – hopefully some of this makes sense to someone.

    • Makes plenty of sense. Yes, another concern is that people may feel forced to go ex-NHS when they can’t afford to – but many private counsellors or therapists won’t work with complex MH needs, or if they do they just can’t provide the kind of crisis cover an NHS Trust should. So it’s still not a fix for the situation in the NHS. Really hoping your therapy helps xxx

      • Am relieved I made some sense.

        Tbh, it is *only* private therapists who will work with DID where we live, but the lack of “out of hours” support is a huge problem.

        Our therapy may or may not help…I don’t know, but like you, I hope it does at some point.

    • James says:

      Hi Broken

      Please excuse mistakes, most of this is off the top of my head. Some years ago now, and especially in the US there was a bit of a craze for ‘Multiple Personality Disorder’, which I think was associated with, similar to or the same as ‘Dissociative Identity Disorder’. A bandwagon of perhaps over-enthusiastic therapists was accused of putting ideas into their clients’ heads about having repressed memories of childhood sexual abuse. The only problem was that in many cases, this hadn’t actually happened – this being known as ‘False Memory Syndrome’; the controversy being described in ‘Making Monsters’, by Ofshe and Watters, 1994/5. I think it was decided that many of the subjects ought really to have been diagnosed with Borderline Personality Disorder (which is also sometimes called CPTSD, Complex Post Traumatic Stress Disorder, because this sounds better and is more informative).

      For many years, a leading figure in Borderline has been Marsha Linehan, who herself survived life threatening personality disorder as a young woman. She has written books, although I haven’t got round reading to reading any of them yet.

  10. I remember going to see therapists, counsellors and doctors between the ages of 14/15 and 21. All asked me how I felt and if my sleep patterns, eating habits and moods had changed from normal. My problem was that I didn’t know what was normal, I’d felt shit for so long. They asked me entirely the wrong questions and because I was so young, and depressed, I didn’t know how to answer them.

    The therapist/psychoanalyst/i have no idea now what his title was told me I was depressed, and recc’d I go to therapy. Ok. My therapist of between 2 and 4 years (my memory of time is wonky) seemed to think my problems were all linked to school. I’m pretty certain they were linked to my family. how could I correct her? I was young, and depressed.
    A GP I saw at University told me I was suffering stress. I’m pretty sure it was depression, but how could I correct her (or him, I don’t remember what he or she looks like) – young and depressed!

    Tbf, I did always get counselling and therapy (tho the therapy was private b/c my mother understood what a mess I was and could afford private fees), which I’m grateful for, even as only for a space for myself, but I don’t feel that any professional I saw really got what I was trying to say, but couldn’t. they didn’t ask the right questions and they didn’t seem to understand how depression affects a teenager’s confidence and ability to ask for what she needs.

    I saw one counsellor I really liked. But I was always late to the sessions (19/20 year old, with depression, isn’t good at 9am starts) so she said she thought I wasn’t getting the best out of the session and recommended I see someone else, who, it turned out, was more interested in my body piercings than my mental state.

    I’m better now. Time and distance from difficult things have helped enormously, as has my partner. But the medical profession was a bit shit.

    • What I don’t really get is why I keep going back and back, hopefully, like a friendly dog wagging its tail each time I meet someone new, despite all the times I have been let down…!

  11. Amanda says:

    I was diagnosed (again) with severe depression in January- my GP sent me away with a prescription and a self-referral for CBT and told me to come back in 10 days, but that she couldn’t help me as she “didn’t know much about depression.” That was the extent of the help I was offered, despite a long history of depression and a family history of alcoholism, bipolar and suicide attempts. I am still waiting for my self-referral to be acknowledged, let alone get an appointment. I have no faith in the system and don’t expect to receive help anytime soon. There is a voluntary self-help group nearby, but it only meets during daytime hours when I am at work. This is the longest low period I have ever had, spanning over a year now with no ‘normal’ bouts, and I really cannot see any way out of my illness now. It does help to hear that other people have had similar or worse experiences, as it is a relief to know it’s not just my lack of self-confidence and assertiveness that is preventing me from getting help. In the meantime, I’ll just have to keep muddling on as best I can. This blog has been a huge source of support for me, so thank you Charlotte x

  12. Kiera Naylor says:

    Your experiences, unfortunately, echo the unhelpfulness a lot of other people have encountered. I’m glad you eventually got some helpful help. I’ve been really lucky in that after some initial setbacks (my GP telling me to just talk to my parents and then some years later not wanting to give me a referral for therapy), I have found a few good GPs, a great psychiatrist and good pychologists. When I moved, I waited about a year and a half to try and find someone closer to home for the exact reasons you described.

  13. csh says:

    Such a sad story, amazed at your ability to keep moving forward. Thanks so much for sharing.

    My “add” would be the time I saw a counsellor at high school about my persistent, desperate depression. She said she was there to help me, but once she found out I was gay, said there was nothing she could do to help because she wasn’t gay herself. And that it was probably just my periods anyway.

    Or the GP I reached out to when in crisis, who told me he could only give me a 5 minute consultation because he had a show to go to.

    Thanks again for the well written post.

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  15. That is why i have been on the same med cocktail that only partially helps and haven’t seen a therapist in ages. No one listens to me and my insurance doesn’t allow for much choice. I have no one to back me up to be my strength. I am the strength for everyone and when i’m where i am right now, there is no hope for up. I have to wait till i’m out of the down spiral and hope i have enough strength to do something about it. it is a serious illness… one i can’t even share with people i love because many have left me… I have no one who can talk for me or with me it is just me. The biggest thing we can do is show people how to listen by being listeners ourselves. I listen to all i can and give advice where needed because sometimes that ear can save a life. It saved mine once. YOU are an amazing person YOU are a brave and inspirational person. the stigma is awful; if only it could be understood. (end my random rant… sorry)

    • Thank you so much…You know the only really good thing about all this is that at least I don’t have concerned about what insurance will cover and whether I can afford my meds – or not yet. So disappointing that our government seems to want to steer us that way… 😦

  16. Nina says:

    Hi Charlotte. Like someone else said, your experiences seem hauntingly familiar. It took from my first referral to MH Services at eleven years old, to age thirty-six to finally get the help and the diagnosis. Like you I feel relieved in a large part now, knowing that I have access to secondary care, even if my CPN hasn’t turned up again today and completely let me down (second time in a row). It’s not so bad. When I’m feeling stronger I can bring it up with him, or with someone.

    I’m sorry that you went through those long years alone, being disbelieved and treated so roughly. I feel even worse for the vast numbers of people that never get that little toe in the door, who struggle on and on and never get recognised or helped. There must be so many out there, probably homeless.

    Regarding Robin Williams, I said to my mother: “There’s a man who knew there was something wrong, because he checked himself back into rehab or whatever, who had the resources to obtain the best help that money can buy, and yet he’s gone. What combination of magic words didn’t get said to Mr. Williams at his clinic? And one can’t help thinking, well, if he can’t be saved, what hope…?

    Hope is something you may as well believe in for yourself because the alternative is too cruel. Believing helps. And for all the people (psychiatrists etc) who think they know the answers, on my better, more optimistic days I feel like perhaps those of us lucky enough to be partway capable are more connected to each other than ever before, and maybe we’ll find those answers between us. What little energy you have for work goes back into the field of MH. I’d like to move that way as I get better, and activities get easier. I’m pretty sure there are a lot more people working in MH now who are experts by experience. It’s a change, and it must be for the better.

    • Thanks for your comment, Nina. I just really thought it was important to put out there the fact that if people like me – educated, articulate, able to explain my feelings and experiences in great detail, in a relationship with a supportive partner who works in mental health – can’t get people to listen, well, we have a major problem in services. So sorry to hear that your experiences have been so similar. I do think that we are getting a better calibre of people entering psychiatry and MH nursing training now. I love it when trainees follow me on Twitter, that they are interested enough to seek out service user’s views. Gives me some hope.

  17. Nicola Lane says:

    Having Aspergers can cause real difficulties too. First the battle for accurate diagnosis, then you become a leper. Apparently all the services in North west London are for “mainstream” people, I apparently need something specialist so they can’t help. Eventually I phoned the mental health commissioner of services and told her to get me some help or explain to the coroner why they hadn’t. Six months later I am on a care plan approach because the NHS don’t have any psychologists for Autism!

  18. Voodoo says:

    My heart sank when I read your post…because I know how true it is. My list isn’t as long as your but it’s too long. The first doctor I saw at 15 told me that ‘not everyone can be the life and soul of the party’, then I had a counsellor who broke confidentiality and contacted me at home, my father who said I was unstable and needed help (an insult, not an offer), another therapist at uni (who looking back was probably a psychoanalyst) who allocated me 6 sessions and left me in a worse state than when I’d started, another therapist at uni; good but went awol, a dr who put me on a waiting list for therapy (that was 13 years ago). I gave up with therapy and ended up with a reflexologist who was also happened to be a therapist and finally helped me. It was very expensive and I was fortunate enough to be able to pay. I wish I’d known when I started to find out which modality they were practicing, I know now that just because one approach doesn’t help that doesn’t mean all therapy is useless. And of course there are good and bad therapists. I am now in the process of training to be a psychotherapist with the aim of helping others but it’s crazy expensive. I am really sorry for your experience. I still believe that people should ask for help but I acknowledge that they may not have the energy to keep going if they don’t get the help they need and that’s something we need to work on.

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  20. Courtney says:

    This really struck a chord with me, having had my first involuntary hospitalization at seventeen, and not getting a diagnosis until I was in my thirties. I had such a horrible experience with the whole mental health system that I told myself they couldn’t help me at all. The first psychiatrist I met, had me take a bunch of tests, but they didn’t tell him anything. The second, told me I was a common criminal and that I should get a girlfriend, as if sex would cure bipolar disorder. Honest, I gave up until I lost just about everything in my life, until the only option for me was to get in touch with a mental health hotline because my heart felt like it was leaking blood, and I was crying, and kicking things, on and off all day long.

    I’m grateful for the psychiatrist I have because I know that there’s so many terrible ones. The sad thing is, if you don’t get a good one, you won’t get assistance. You’ll get tossed into the welfare system if you can’t support yourself, and because you can’t meet the requirements of the welfare program, not being able to actively work, or even search for work, you’ll get kicked off. Our lives are literally in the hands of our psychiatrists, and some of them are terrible people.

  21. butterflywgs says:

    Wow, your first psych sounds wonderful. ‘He twisted my words until I hardly understood the conversation any more and was almost screaming with frustration’. I HEAR YOU. (And if we do scream, we’re ‘behaving badly’, ‘abusive’, ‘difficult’). Similarly, when I was first referred to a CMHT and first realising more was going on than depression and anxiety, the first psychiatrist I saw dismissed and disbelieved my fumbling attempts to explain. What is wrong with these people?! How difficult would it be to think ‘something is clearly going on here, I need to listen and draw out what that is’ instead of ‘s/he’s lying’.
    Nothing else to add but ‘Yes’ and *nods*.

    • I had actually kind of purposely forgotten about him until I started writing my book, which prompted me to dig out my diaries from my uni years. I have out interactions recorded almost work for word, just reading it shocked me all over again!

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  23. lindsayjopling says:

    Hi Charlotte! I’m currently signed off work due to a work-related stress-induced anxiety problem. I read this blog entry a few weeks ago and was horrified that you could have had such awful experiences and I thought to myself I must have been lucky not to experience the same.
    Until today! I saw a doctor this morning to further be signed off from work and the inevitable discussion regarding medication came up. I have always said I don’t want to take medication because I would rather tackle the issue with therapy and CBT which I have and I feel a lot better, albeit there is still some way to go. I was told that I’m clearly not better if I can’t go back to my (high pressure full time with a four hour daily commute) job on Monday, that I should take the medication because it will make me better whereas nothing else has, to ignore the personal accounts of all the people who have become addicted to it/experienced terribly distressing side effects and withdrawal symptoms, and finally that ultimately he didn’t care what I do. He literally said “Ultimately, I don’t care.” Astonishing. It’s very disappointing that this doctor did not wish to support my choice to solve the problem with an alternative to medication, even though it might take more time. Needless to say I did not make a repeat appointment!

    • Wow! Well, the NHS is paying him a really decent salary to care. Not sure why people think it’s good enough to pocket that salary and not care. With a GP it’s easier to vote with your feet, but when there is one psychiatrist covering your area that gets a lot harder. And they’re paid even more!

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