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It's taking too long to sweep away the 'shame' of mental illness

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It's taking too long to sweep away the 'shame' of mental illness

One of the joys of having a new book out is the feedback. One of the great advantages of social media is the ease with which the feedback can be given, and received, and lead to genuine interaction, create ideas and even friendships. The book, Living Better, is about depression, not on the surface the happiest subject, but I have genuinely found the feedback uplifting and heart-warming.

Stephen Fry’s is the front-cover quote — “This Book Could Save Lives” — which is the kind of dramatic, OTT statement publishers love on a cover. But then I trawl through some of the several dozen Amazon reviews (averaging 4.5 out of 5 stars, with a couple of trolls having their fun for the missing 0.5) and I see this one, which moves me to tears, of both sadness and joy.

“I am reading this book at a time in my life when I have hit rock bottom. I’ve been depressed all my life and once acted on level 10, but now I know that level 9, although a horrible place to be, is my stopping point. Over the years the professional help hasn’t helped me and I wish I’d read this book years ago. Over the last few days it’s been such a comfort to know, realise and understand that I’m not alone. This book is so honest and insightful, it has helped me on such a subtle level. It oozes insight and compassion and I urge anyone who has or is suffering from depression to read it because it will save someone’s life. It’s saving mine.”

The numbers that this person refers to are taken from my depression scale, in which 1 is deliriously happy, and 10 is suicide. I too, as I say in the book, have 9 as my “stopping point,” and I too have known what it is like to feel myself tipping towards 10, the act of suicide.

Apologies — I accept it is a bit naff for an author to write about a rave review of his own recently published book, but when I read this comment saying that reading the book has “saved my life”, I think back to those lonely moments — every writer has them — when I was wondering whether the book was worth all the time and effort I was devoting to it, and realise, that it was. I have had several messages like the one above, including one from Ireland, sent to me via the broadcaster Ryan Tubridy. The writer said he’d heard an interview between the two of us that brought him back from the brink. Every single one of them makes me feel glad of those late nights and early mornings, when I was determined just to “get the bloody thing done,” to quote the motivational Post-It note on the wall behind my desk.

My 1-10 depression scale seems to have struck a chord with quite a few people. Like @highwaylass on twitter, who posted: “Reading @campbellclaret book on depression. It’s very good, especially his personal depression scale. Turns out I’ve been at what he would call a 9 — the worst it gets before you actually harm yourself — for some time. Oddly, I feel better knowing that… I’m not weak, just ill.”

As to why she would even think a bad depression — nine is really, really bad by the way — was a sign of weakness rather than illness, well, that is what the history of our civilisation has done to us as humans. It’s made us think that the stiff upper lip, the urge to be a “strong silent type” is better than saying the short simple sentence: “I’m struggling.”

Another short simple sentence told by parents to children has had a far greater hold on humans down the Millennia: “leave your mind alone, dear.” But what if the mind won’t leave itself alone? What if the mind is troubled? Many of them are, and the best way to get them untroubled is to admit to a problem, not deny it, hide it, store it away, to come pouring out later on psychiatrists’ couches or, more likely, A and E wards, divorce courts or prisons. Nobody would say “leave your body alone, dear,” if it were suffering unbearable pain, oozing blood, or a bone were broken. But centuries of deeply ingrained attitudes won’t change in days, months or even years.

Into my website mailbox pops another wonderful, very different kind of feedback, from a woman called Vanessa Wheeler, which again inspires a mix of sadness at human suffering, but joy that someone decided to share so much with me, including a 200-year-old piece of writing that struck a particular chord.

First, the sadness. “I was reading the Guardian,” she told me. “A health worker who’d developed PTSD post-Covid did not want to seek treatment. Why? She did not want a mental health condition on her medical record. Why? Because she feared that if she got Covid again she might be written off as ‘all in the mind’, the symptoms could be missed and she then might die.”

That reminded me of an NHS nurse I write about in Living Better, who did not share her bipolar diagnosis with her colleagues and bosses out of fear it would be held against her if she went for promotion. It means that when she is depressed, she keeps her young daughter at home rather than have other hospital staff see her dropping her off at school, which would blow her excuse for taking time off — “my daughter’s not well.” So a whole family gets the message — from an NHS nurse no less — that it is better to lie about being ill than tell the truth and ask for help.

Vanessa, also Type 1 bipolar, with a number of long psychiatric hospital spells behind her, especially in her 20s, described several occasions when she went to a GP with a “normal” physical illness but, due to her mental health record she felt she was not taken seriously. “He told me very politely to ‘stop wasting my time.’” She was once accused of “faking” seizures, she says. “Who could or would do that?” When she and her husband had a daughter, she was told her worries about the baby’s health were actually about her own attention-seeking. It transpired the child had a severe kidney infection. When Vanessa feared she had breast cancer, she was told it was anxiety, and it was only when her husband paid privately for tests that they discovered her fears were real.

She has changed GP, and is full of praise for the new one, and for other health professionals who have helped her. But she says she comes across discrimination in the healthcare sector and the workplace again and again, whenever she talks to people with bipolar disorder, schizophrenia, personality disorder, major depression or other serious mental health conditions. Join the club, Vanessa. Well, actually she already has, because after starting out life as a scientist, following her own troubles she switched to law, and is now an experienced lawyer, specialising in discrimination.

“We need Mad Pride,” says Vanessa. Mad Pride is a movement of people who use mental health services who want no longer want to feel ashamed of their conditions. It has been around since the 1990s, indeed she was involved in it, but recalls it being chaotic, and recalls too that lots of the people involved ended up seriously ill or dead. She herself ended up in Guy’s Hospital for a long spell of psychiatric treatment. But precisely because we have managed to move the campaign arc since then, even if there are far more people out as gay than who admit to having a mental health challenge, she thinks a reboot would work. The stigma will only go if anyone with a mental illness feels they can be open. The time for that approach has come.

“There are tons of people with SEM [Severe and Enduring Mental Illness] from the top down, from judges to binmen, who fear for their livelihoods by coming out.” She remembered the occupational health doctor who said: “The economy would not function if people with SEM were not allowed to work. We need to normalise it. Stigma needs to go. That’s why we need Mad Pride again.”

The theme of Mad Pride is that people with mental illness should be proud of their “mad” attributes. I certainly am. As I say in Living Better, I feel that any success I have had in my life has come not despite mental illness, but partly because of my mental health struggles. These have given me resilience, but also creativity and energy and, I hope, empathy.

The first Mad Pride was formed in Toronto in 1993 after prejudices in the community were exposed towards people with a psychiatric history. An annual event is held, partly to remember, partly to campaign for continuing change. Similar Mad Pride campaigns and organisations followed in the UK, the US, Brazil, Australia, France, Portugal, Ireland and South Korea. However, even in the mental health campaign sector, I suspect Gay Pride is better known than Mad Pride.

Vanessa tells me here will be a Mad Pride parade on 24 July next year in London. One of the reasons she feels so strongly — and this is something I hear all the time — is that in some ways, the stigma and shame she has felt has been worse than the illness “and I am speaking as someone who has been very unwell.” She says: “I had to hide a huge part of myself or frankly be unemployable. I tried being honest about my time in Guy’s but that was met with horror and fear by interview panels.”

She suggests, and again may have a point, that “when celebrities and artists admit to mental health problems, it is not as powerful as when it is surgeons, physicians, leaders in business, bankers, MPs, accountants, dinner ladies, teachers.” Back to the gay rights campaign analogy: “Before society accepted homosexuality in general society, they tolerated it more in the arts. With writers, painters, actors and so on, mental health problems are not seen to demean in the way they demean the rest of us. In some regards it adds to their appeal. But we need these other professions to get the stigma gone.”

A senior Catholic priest who came out as bipolar in the middle of a sermon, she says, is a rare exception of someone from that kind of background who has said so publicly. And, as religion thus hoves into view, that leads me to the 200-year-old piece of writing I mentioned earlier. It is a letter written in February 1820 by a man named Reverend Sydney Smith, to the daughter of the Duke of Devonshire, Lady Georgiana Cavendish. Vanessa says she reads it when she feels her mood heading in the wrong direction towards the ten end of the scale, and she told me:

“I was in hospital in Chelsea, I was about 21, terribly depressed, and I struck up a friendship with an expert on Mary Shelley, who was about fifty, an academic. There were no computers in those days. She walked home to Battersea one day and returned with this, having typed it up for me. It has been a constant in my life on the wall of the loo ever since, and it helps.” Like Vanessa’s email to me, Rev Smith’s letter is clearly a message from one troubled mind to another. It read:

“Dear Lady Georgiana,

Nobody has suffered more from low spirits than I have done, so I feel for you.

1st: Live as well as you dare.

2nd: Go into the showerbath with a small quantity of water at a temperature low enough to give you a slight sensation of cold.

3rd: Read amusing books.

4th: Take short views of human life — not further than dinner or tea.

5th: Be as busy as you can.

6th: See as much as you can of those friends who like and respect you.

7th: And of those acquaintances who amuse you.

8th: Make no secret of low spirits to your friends, but talk of them freely — they are always worse for dignified concealment.

9th: Attend to the effects tea and coffee produce upon you.

10th: Don’t expect too much from human life — a sorry business at the best.

11th: Compare your lot with that of other people.

12th: Avoid poetry, dramatic representations (except comedy), music, serious novels, melancholy, sentimental people, everything likely to excite feeling or emotion, not ending in active benevolence.

13th: Do good and endeavour to please everybody of every degree.

14th: Be as much as you can in the open air without fatigue.

15th: Make the room where you commonly sit gay and pleasant.

16th: Struggle little by little against idleness.

17th: Don’t be too severe upon yourself, or underrate yourself, but do yourself justice.

18th: Keep good blazing fires.

19th: Be firm and constant in the exercise of rational religion.

20th: Believe me, dear Lady Georgiana.

Very truly yours,

Sydney Smith. February 16, 1820”.

I can see why Vanessa enjoys reading it. There is a lot of very sound advice in there. I enjoyed it too, not least because, albeit in a very different age, and a different style, many if not most of his points echo those I made in a piece at the start of lockdown, headlined “20 Ways To Avoid Depression and Anxiety.” Apart from his Points 12 and 19 — and 19 only because I don’t do God whereas clearly, as a Reverend, he had to — I think we are pretty much on the same page.

Here are my 20.

1. Try to stay active. When your mood is low, your energy is low. The temptation to do nothing is strong. Try to resist it.

2. Low mood means low energy. Trapped in the house, the temptation to do nothing is strong. Try to resist it.

3. Watch your diet. Try to eat as healthily as possible.

4. Watch the booze. Try to drink less than you were, not more, at home.

5. Sleep.

6. Read books not newspapers. I think it is important not to overconsume media at a time like this. Books that have nothing to do with the current crisis can be such a wonderful release.

7. Cut down on social media. It is natural to want to try to stay on top of events. But endlessly scrolling through social media feeds is not the best way to do it.

8. Listen to music regularly.

9. Even better – make music!

10. “Think in ink.” There is a therapeutic benefit to committing thoughts to paper.

11. Really look after the people closest to you. Be as nice and as kind as you can possibly be.

12. Keep in touch with the people you would normally be in touch with.

13. Get in touch with someone you’ve lost contact with.

14. Do something good for someone else every day.

15. If you are finding it hard to do difficult things, try a few easier ones first.

16. Stay curious.

17. Enjoy nature.

18. Remember that all crises end eventually.

19. Keep things in perspective. Don’t panic. And finally …

20. See an opportunity in every setback. Get good out of bad.”

Perhaps I should have been a vicar.

More seriously, it reminds me once again, just how slowly the campaign arc sometimes moves. Two centuries on, we are saying so many of the same things, and fighting the same fight, to be able to talk of such things publicly, free from shame, stigma or taboo.

I am so grateful that Vanessa Wheeler wrote to me, and so grateful for all the other feedback, which makes me all the more determined to keep fighting.

 

Living Better (John Murray Books) is out now in hardback, ebook and on Audible

Member ratings
  • Well argued: 88%
  • Interesting points: 84%
  • Agree with arguments: 88%
19 ratings - view all

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