My bipolar expedition

doi:10.1136/bmj.332.7532.30

BMJ 2006;332:30-32 (7 January), doi:10.1136/bmj.332.7532.30

Practice

Patient's journey

My bipolar expedition

Suzanne G Johnston, adviser¹

¹ The Cairn, Brincliffe, Dhuhill Drive West, Helensburgh G84 9AW suzygj{at}yahoo.co.uk

Suzy Johnston, a writer, adviser, and author, takes us on thejourney that is her life with bipolar affective disorder

When I received my diagnosis of bipolar affective disorder (manicdepression) I was relieved. Finally, and at the age of 22, someonehad told me that I wasn't going mad, wasn't barking, and wasn'tgoing loopy or any of the thousand other things that filteredinto my overwrought mind at 2 00 am every night. No, I had anillness and, although I had a long and bumpy road ahead of me,at least now I had a hook on which I could hang my symptoms.That, to me, was progress.

Road: an open way for passage or travel, esp. one between distant points; a highway

I first stepped, blind, shoeless, and alone, on to the roughand winding road that is bipolar disorder 16 years ago whenI was 16 and in my final year at school. I became hugely depressedand was horrified how destructive depression can be—notonly does it leave the sufferer unable to feel any emotion otherthan intense misery, it also removes the ability to reflectthe emotion of others—for example, sharing in someone'sgood news—and this can be desperately isolating (box 1).Bipolar disorder is characterised by episodes of mania (overlyelevated mood) and depression, both of which can have horrificeffects on the sufferer. When manic, people may behave entirelyout of character and be extravagant in their behaviour—forexample, spending huge amounts of money well beyond their means,driving erratically, becoming delusional, etc. When they aregoing through a depressive episode their mood can be extremelylow, and they may have thoughts of harming or even killing themselves.

Many people experience only one episode of either mania or depressionand then go on to lead perfectly healthy and, for want of abetter word, normal lives. However, I was to find myself inthe minority of people who discover that their roads are fullof potholes and sharp inclines. My learning curve was steepbut necessary, because ignorance and mood disorders are potentiallylethal partners.

Opening my eyes

I found out that I had bipolar disorder really by accident,as I had been sent to see a psychologist and she read out theletter of referral to me. It began with the words "I am sendingyou Suzanne Johnston, who is a 22 year old manic depressive."This was not the ideal way to find out that you have a majorpsychiatric illness, but, frankly, I was just glad to have aname to put to what was wrong with me. I had spent the precedingfew months at university reading everything I could find aboutmood disorders, and I had come to the conclusion that, yes,I had bipolar affective disorder. When the psychologist readthat letter to me the first thought to go through my head was"Right, now that I know what is wrong I can start to do somethingabout it." However, it should always be remembered that forsome people, such as myself, receiving a diagnosis can be empowering,whereas for others it is a disaster. Professionals should alwaysbe aware of this potential impact and offer as much supportas possible.

Suzy Johnston, who has had bipolar affective disorder since the age of 16

I saw the psychologist once a fortnight for a couple of years,and at first I was a little unclear why I had been sent to seeher as I had no problems in my childhood, got on great withmy family, and, apart from when I was ill, was pretty happy.Gradually I began to understand that she was teaching me howto cope with everyday situations, when bipolar disorder is throwninto the equation. For example, if I'm feeling depressed andsomeone makes some casual comment that I wouldn't normally thinktwice about, I can be oversensitive and give my self esteema real battering. Also, I had been by nature a very privateperson, and the psychologist taught me to be more open and forthcomingabout my illness so that it would be easier for me to discussmy condition with doctors, nurses, friends, and family. Thisis a positive and constructive use of resources that can helppeople with serious psychiatric disorders live a fuller, healthierlife. After all, when someone has recovered from breaking theirleg they may receive physiotherapy to help them walk again.In the same way, someone who is recovering from a severe episodeof depression (box 1) might need a psychologist to help themaccommodate their condition in society.

Walk with me

An area in which I have been hugely fortunate has been the medicaltreatment that I have received over the years. This startedin St Andrews when I was a student and continued back in Helensburghwhen I returned to the care of Dr Calder's practice. I can'tsay enough good things about the doctors there—I reallyowe them my life.

I have been admitted to my local acute psychiatric unit manytimes, but I have the unshakeable belief that it would havebeen many more times had it not been for the superb care ofmy community psychiatric nurse, general practitioners, and psychiatrist.There are many examples of good practice to choose from butone that sticks in my mind is when my community psychiatricnurse sent me to see my general practitioner because I was tremendouslydepressed. We talked for a while, and she told me that as Iwas on the maximum dose of antidepressant she thought that shecouldn't increase the dose, and putting me on another varietywould take two to three weeks to become effective. We were bothunhappy at this turn of events, so she told me to go home andthat she would phone me in a couple of hours. She kept to herword and called me to tell me that she had spoken to my psychiatristwho, in turn, had phoned the manufacturer of my particular antidepressantto ask them if it was safe for me to be on an increased level.The company replied that there should be no problem and gavethe go ahead. The consequence of all this was that I was puton an increased dose of antidepressant and, probably becauseof this, managed to avoid being admitted to hospital. Thus,a few phone calls and a willingness to go that extra mile tohelp the patient, probably not only helped me but made a savingof thousands of pounds. My general practitioners, communitypsychiatric nurse, psychiatrist, and I are part of a team. Weall work hard and effectively to keep me well and out of hospitaland, more importantly, to keep at bay those terrible thoughtsthat sluggishly circumnavigate my brain at times. These thoughtscan be so demanding and viciously destructive that sometimesinpatient care is the only option. However, the human spiritis a remarkable thing. Sometimes it is possible to be in thedarkest of places and yet see light in the most unsuspectingof corners. There is always hope (box 2).

Box 1: The dark side

Breathing. In and out. In and out. Thismakes no sense—it doesn't seem possible to be alive andyet feel so miserable, so wretched. I feel death parading throughmy body, calling out to me and mocking my feeble attempts atresistance. A black liquid oozes from my pores and covers myskin in a slick, disgusting sheen that only I can see. Darknesscreeps through my veins and launches a visceral attack on mysoul. I am helpless and floundering, lost in this relentlesshammering of depression, with psychosis scraping its talonssickeningly against the inside of my skull. This is not "feelinga bit down" or "a bit low"; this is full blown clinical depressionwith psychosis riding on its coat-tails for kicks.

Have I feltlike this many times? Yes, often, and every time feels likethe first time. These "potholes" that I fall into vary in depth,shape, and difficulty of escape. It is tempting to curl up andpretend that everything is okay. I wish. Running from yourselfis hard to do.

Imagine that you are watching television andthat the sound and pictures are your thoughts and emotions.To start with, everything is fine, and you have no difficultyin making out what you are watching. However, then a littleinterference appears on the screen, and it becomes harder tomake sense of what is going on. This is what it is like whenpsychosis begins—you can still feel and understand yourthoughts and emotions, but it takes a little more concentrationthan normal. When the psychosis takes over completely the "televisionscreen" is completely overwhelmed by "interference," and itbecomes impossible to make out any thoughts or feelings of yourown as the psychosis dominates. Part of the problem I foundwith this is that I became unable to differentiate what wasreal and what was psychosis. I lived in a world for six monthswhere I strongly believed that I was the most evil person onthe planet, nurses and doctors were planning to kill me, andmy parents, with whom I lived at the time, were plotting tothrow me out of the house and I would have to live destituteand alone in London for the rest of my life. This was my reality.

An increasing gradient

In this frustrating world of stigma and fear, it is encouragingthat the National Programme for Improving Mental Health andWellbeing (www.wellontheweb.net) is making such progress inScotland. Have I encountered stigma? Yes, and my worst experienceof it was at my local accident and emergency department, whereI was told that I was a "waste of time" because I was worriedthat my lithium level was too high. I also recall, on a separateoccasion, being asked to leave the hospital canteen becauseI was a psychiatric patient. It is because of these and otherinstances that I believe that one of the biggest harbourersof stigma is general medicine in hospitals. To the patient beingtold to "Pull yourself together" after a suicide attempt. Thatisn't going to help anyone, and it is crucial for those in attendanceto be willing to listen to the patient and act responsibly ina caring and supportive manner. Staff in accident and emergencydepartments especially must learn how to deal effectively withpsychiatric patients as they are often the first port of callfor those in acute mental distress with the same being applicableto police forces and general practitioners.

Box 2: Some light and laughter

One evening, when I was feelinga lot better and gearing up for discharge from the Christieward, my Dad dropped by and offered to take me to the nearestMcDonalds for a bite to eat. I thought that would be good andsaid that I would just pop into the "smoke room" to see if anyoneelse wanted anything. Sure enough, as I went along the lineof occupied chairs people called out "Big Mac," "McChicken Sandwich,"and "Cheeseburger." As I reached the end of the line I realisedthat one person hadn't asked for anything; he was a new patientwho had hardly said two words since his arrival the day beforeafter an unsuccessful suicide attempt. I debated whether toask him and then thought "Sod it; why not?"

"James. Would youlike something from McDonalds?"

No response. Try again.

"James.I'm off to McDonalds and wondered if you'd like anything?"

Iwas met with a glare from James and after what seemed like aeonsof silence he came out with the immortal words "Happy Meal."

Weall burst out laughing, everyone, nurses and patients—evenJames when he realised what he'd said. Laughter is a great equaliser,and suddenly we weren't nurses and patients anymore, just peopleenjoying a good joke.

I feel it's important to remember instanceslike this as it is not only patients who can become institutionalisedbut also nurses and doctors. After all, as patients we may spenda considerable time in hospital but the staff spend year afteryear there, and there is a very real danger of them becomingentrenched in their ideas and approaches to the patients.

Finding some shoes

Do I have mental health problems? Hmm, yes, I suppose so—butI prefer to bring the terminology into the 21st century andcall them mental health challenges. Now that I seem to be onthe correct medication, I am, for the most part, able to leada full and varied life. I play hockey, I'm the lead guitaristin a rock band, and I write and advise on mental health issues.My life, albeit as a person with bipolar affective disorder,is far from over. I'm certainly not giving up on myself, andeven when I'm ill I gain reassurance from those around me thatthis is not the end and that I will regain the life that seemsto have shattered into a million pieces during this particularcrisis. Life is like balls being thrown at you from all sidesof a tennis court. I'm still working on my backhand. How goodis yours?