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Annette Shaw's Story
As I approach the zone of an older, wiser crone I’ve had a lot of time to consider my life, how I got to be 100% housebound with agoraphobia and where I am today. What went wrong? What went right? And what, on reflection, would have made a difference? Benjamin Fry is so right when he says that by telling our story we can help each other. I hope that aspects of what you’re about to read encourage you to keep moving forward and that together we can reach the professionals and Powers that Be.
I’m a writer. I set out to the write for The Times and I did. And the Daily Mail, the Daily Express and many magazines. From my front room I’ve interviewed celebrities including Anita Roddick, Maeve Binchy and Fay Weldon along with ordinary people with amazing stories to tell. I’ve written NHS Annual Reports and on less glamorous days done telephone research and cold calling. This year also marks my 25th anniversary of being self-employed as a taxation advisor and more recently a PR consultant. That sounds like a bit of a mix but it was born out of necessity to pay the mortgage.
It would take a whole book to explain the last 35 years but in a nutshell this is what happened. What I later found out to be panic attacks spiralled into a pattern of avoidance behaviour. Decades of agoraphobia permeated every aspect of my life. In the worst times a neighbour took my day’s work to the mailbox, 50 yards from the house, because I’d get to the front door and feel like I’d walked into a force field. There was a 20-year absence in cultural activities like a concert or the cinema. There was a 10-year gap in visits to the opticians. In June 1987 I collected some francs from Barclays. It was 15 years before I went back inside a high street bank. In 2010 I finally made it to a hairdressing salon. That’s a really tricky one for an agoraphobic because you’d look daft leaving with half a haircut.
To back track, in 1976 I won a public speaking competition and my social life was pretty good. I loved travelling, did a cruise up the fjords, cycled round Ibiza and dated a man in Paris. I joined the British Atlantic Society and was invited to a drinks “do” at the American Embassy in London. Trips to NATO and Shape Headquarters followed. Then in 1977, when I was age 20, I was at a friend’s party. Suddenly it was hard to breathe, the room was spinning and I was being flung off the edge. I was going to faint. No one seemed to notice. I got a glass of water and drove home. It happened at work in the tax office, again in the supermarket and at the hairdressers.
I went to the see the doctor. With no discussion about what else was going on in my life, like being bullied at work, he prescribed tranquillisers. My world narrowed, but as long as I took the pills there was a semblance of normality. I bought a flat and left the Inland Revenue to work in a local accountancy firm. By this time I could no longer travel overseas, or any distance, alone.
Ten years on and over 100 repeat prescriptions later I saw a BBC programme on tranquilliser addiction. It had a profound effect on me. I reduced the dosage and the panic attacks were ferocious. I bought a book the gist of which was, the fear would peak and pass; imagine you are in a boat and let the panic float by. Peak? Float? Mine kept on rolling, like a transcontinental freight train with a mission. Only when I was safe, at home, did it slow and then I’d curl up and cry with relief. Driving to work in traffic became impossible. I rang the doctor since I couldn’t have sat in a waiting room full people even to save my life. He left a prescription at reception. I was back on tranquillisers. With a mortgage to pay I had to come up with a plan. So, I got a subcontract job with a local firm of accountants and was allowed to take files out in my own time. To do this I set my alarm for 5am and parked outside the office before anyone was around. The car was an extension of my protective shell, a sort of mobile home. One morning, on my way back at 5.30am, I pleaded with a policeman not to book me for illegal parking. Everything I earned that day went on a traffic offence.
Working entirely from home was the only option. I set up as a taxation consultant and placed adverts in the local press and parish magazines. By 1991 I had over 100 clients. With the business on autopilot and with the help of Swiss army knife I tried withdrawal again. I cut the tablets into halves, quarters, eighths and then slivers. The last one was on 30th April 1991. As my mind and body realised this time I was serious the lid lifted off the emotional equivalent of a pressure cooker. Then there was the chemical fallout. Some of the symptoms and feelings which started then have never left me.
In 1991 I heard of a Surrey based clinical psychologist in private practice. In sessions spanning the next two years we turned over every stone and I began to understand how the avoidance and sabotage mechanisms worked. In addition I read everything from Carl Jung to Norman Vincent Peale plus mountains of health books covering psychology, complementary health and general medicine. In 1993 a tax client became editor of Practice Manager, a medical journal, and I seized an opportunity to write. My editor friend published it and I became the magazine’s health writer. My work developed and within 18 months I had my first by-line in a national newspaper.
Over the years I honed my skills as a writer and used my position to write about emotional and mental health. The stigma I felt in the early years has diminished but it’s still there. For example, a longstanding client, now deceased, asked me to meet her stockbroker in London. I couldn’t get to the City on my own so arranged to see him out of his office and the broker was fine with that. Given the investment portfolio he would have got on a plane let alone travelled down the A3. She made no bones about not dealing with anyone with head problems and fired me.
It was 20 years before I got anything other than pills from the NHS. For psychotherapy I was told I’d have to attend a hospital some 15 miles from my town. But I couldn’t get there. In fact, if I could have, I wouldn’t have had agoraphobia! So, a behaviour therapist was assigned to take me shopping. She was calm and patient and over 12 months let me explore what I could achieve, like walking away from her on the high street or she’d stay in the car when I got petrol and queued to pay.
However, what I’d not factored in to recovery was how long it would take me to repay survival loans, which with interest, came to £11000. The money funded private psychotherapy, a nutritionist to help me detox from the tranquillisers, yoga, aromatherapy and reflexology. Life costs and my austerity measures left no room for practising being in a restaurant, holidays, the movies or anything else. I‘ve missed so much in terms of any family life, relationships and no-one is ever going to say, “Hi mum.” A friend brought me a meal every Sunday for 12 years and came each Thursday lunchtime so I’d be guaranteed to see someone twice a week and have something in the diary to look forward to. Friends and neighbours did my shopping and between us we planned a week’s menu for £10. I’d make soup and freeze it in portions, ditto tuna pasta bake and homemade bread.
Benefits were refused on the grounds I worked. And I don’t regret doing that. My skills enabled me to help charities from the Prince’s Trust to the Citizen’s Advice Bureau and contributed to a life of value. Work gave me a focus, an identity, it was incredibly interesting and I’d encourage self-employment. Over the years I saw a high proportion of tax clients make home-based businesses as a lifestyle to accommodate health issues. I acted for a picture framer with depression, a soft furnishings maker with chronic anxiety and a massage therapist who had panic attacks away from her house. People like us create a framework for survival which can’t just be torn down.
In 2005 I moved to the West Country alone to get a house with a tiny garden. My feeling is that there has been an upward trend albeit it painfully slowly. To say I resist making progress seems a rather harsh critiscism but that’s where I found myself last year. A series of events led me to my GP and subsequently I paid someone to accompany me to an NHS Cognitive Behaviour Therapist. I was asked to buy two books – The Happiness Trap and an American manual called Get Out Of Your Mind and Into Your Life. I was given Values Assessment Homework and had to write answers to questions like: describe the type of brother/sister, son/daughter, father/mother you want to be. Describe the qualities you would want to have in those relationships. Describe how you would treat the other people if you were the ideal you in these various relationships. If someone had suggested this as a self-help review in 1977 maybe it would have made a difference. In 2011 I’d got a legacy of 30+ years of struggle, recently lost my sister to life in the mountains overlooking the Adriatic and my father was inching his way through Alzheimer’s and soon to die.
I didn’t feel I was being heard. The first line of CBT was to address Social Phobia and I heard about my therapist’s recent success with a young man who was bothered about being looked at. She photographed him and showed he was an OK guy ... and all the while I’m baffled, thinking I’m a PR consultant, just helped host a Macmillan fundraiser and I’m fine with my current by-line picture. So we switched to Driving Phobia and I got another flow chart. It was all a bit manic and on a par with teaching a seasoned anorexic to bake and then wondering why she held back on eating the Victoria Sandwich. A mind with a 30 year legacy of struggle to survive isn’t a mechanical process to be fixed by arrows and boxes. After two sessions I cancelled and turned to Cruse Bereavement Care after the death of my dad. That has helped, particularly as other losses surfaced. Again, it‘s calm and allows me to feel safe whilst I come to terms with a very difficult event.
I first wrote my story in 1993 for Practice Manager magazine. As part of the article I included an advice sheet and asked all practice managers to flag it up their GP’s or to put it on the waiting room notice board. A doctor/homeopath supported it by saying, “I feel it would be helpful both for patients and doctor to have this kind of advice readily available in the surgery. I think you have achieved the right balance between self-help and doctor care. I fully support this initiative to help anxiety sufferers.” When asked to comment and give my plan her blessing, Virginia Bottomley, then Secretary of State for Health and my MP, refused to reply.
My hope for the future is that doctors, who remain the gatekeepers of care, move heaven and earth to stop youngsters falling into the same black hole as I did. Policy on prescribing Benzodiazepines may have changed but patients need time investing in them when mental health issues first surface – it doesn’t take long for avoidance behaviours to kick in. Likewise I believe that we must all take more responsibility like leading a balanced life and taking care over lifestyle, food and drink.
It’s not a vote winner to suggest patients pay for their own care. Neither is mental health a sexy media story. I’d love to see a docu-drama or hear a radio play - I have written one. Yet mental health problems affect so many of us. One way forward is to open it up for discussion. At my age I’m generally more direct about it and if I need assistance to go to a meeting I arrive with someone. However, at an event attended by the Princess Royal a chap from the Met, noticing I was in the passenger seat, winked at me and said, “How much over the limit were you?” Having never been considered so racy I didn’t enlighten him.