living with mental illness - a student's guide
TRANSCRIPT
Have you ever stigmatised or discriminated
against somebody?
Have you ever been
discriminated against?
STIGMA AND
MENTAL ILLNESS
What were your responses to those
questions?
Keep those in mind while you think about the
following…
How do you think stigma affects those with mental health
problems?*
Have you ever seen doctors or other medical students
behave or talk in a stigmatising way?
*What effect do you
think this might have on patients?
What do you know about stigma?
*Have you ever seen
stigma? What happened?
*Do you think it is
important to have an understanding of
stigma as a medical student?
*Why is mental illness
so stigmatised?
Now keep those questions in mind
while you read this presentation, and
see if some of your responses change
by the end.
REMEMBERLearning medicine
isn’t just about passing OSCEs…
What is
stigma?
Stigma is defined as a sign of shame; of being rejected, shunned or disapproved of
by others.
Stigmatisation in relation to mental health can take
many forms. These include name calling, distancing
oneself from somebody who develops mental illness, or
dismissing their experiences.
Stigma is an opinion or judgment. When stigma is
acted upon, it becomes discrimination.
Negative attitudes to people with mental illness are prevalent in society.
At a young age we learn through our society to have certain prejudices that are
carried through into adulthood.
People with mental illness are stereotyped; for example the idea of
schizophrenics as violent potential killers, or people suffering from depression as lazy and self indulgent.
Why does stigma
happen?
Sterotyping makes it easier to dismiss the experiences of whole
groups of people, creating a ‘them and us’ mentality.
Negative coverage of mental illness in the media reinforces
stereotypes, increasing the level of false negative beliefs about
people with mental illness.
This causes people with mental illness to become dehumanised
and socially excluded.
This can alter the perception that someone might have of their self, leading to further social isolation, reliance on others and alcohol and
drug abuse.
Why does stigma
happen?
Link and Phelan 2001 proposed that:• Human variations are labelled,
which creates distinct groups of people.
• Labels tie people to negative attributes in accordance with society and culture. This causes stereotyping to occur.
• Labelling creates distinct groups, allowing an ‘us and them’ mentality. This dehumanises the labelled group.
• Labelling causes discrimination and loss of social status, leading to unequal circumstances
Link BG, Phelan JC. Conceptualizing Stigma. Annual Review of Sociology 2001; 27: 363-385.
Labelling and stigma
Stigma socially discredits a person by assigning a
negative attribute to him or her. This creates a negative, undesirable
stereotype.
It is the reaction of others which spoils identity.
Erving Goffman, Stigma: Notes on the Management of Spoiled Identity, 1963
Goffman 1963
Goffman describes three categories of people: the stigmatised, the normal
and the wise.
The wise are a division of the normal’ but understand
and sympathise with the stigmatised, and therefore
are accepted.
The wise may also bear stigma from the normal for
being accepted by the stigmatised. This is called courtesy stigma, or stigma
by association.
Goffman 1963
Research carried out by the Mental Health Foundation found that of people who have experienced mental ill health:
• 56% have experienced stigma from their family.
• 51% have experienced stigma from their friends.
• 47% have suffered from discrimination in the workplace.
• 37% have experienced discrimination when seeking employment.
• 44% have experienced stigma from their GP
• 35% have suffered discrimination from other health care professionals
How common
is stigma?
Figures are taken from http://www.rethink.org/living_with_mental_illness/everyday_living/stigma_mental_illness/index.html
Stigma creates barriers. People who may be suffering from
mental illness are reluctant to access services because of the
negativities associated with having a diagnosis of mental
illness.
Stigma from healthcare professionals can lead to
people with mental illness not being taken seriously, not
being listened to and not being supported.
It can also lead to a reluctance to discuss symptoms of mental health problems with patients.
Stigma in healthcar
e
Read the following accounts of 2
members of the Patient Voices group, as they
share their experiences of
living with mental illness and the
stigma it brings.
LIVING WITH
MENTAL ILLNESS
Name:Dr Kenneth Townend PhD Age:53 What condition were you diagnosed with?Depression due to stroke When did it all begin?2004 when i had a stroke and lost my car/job/hobbies etc What symptoms did you experience?Tired all the time. Stressed at anyone, would throw plates etc. Due to being told “go in a corner for the rest of my life” by a hospital consultant. Where you aware that the symptoms you were experiencing were not “normal”, or did they feel “normal” to you? I wasn’t aware until i had bereavement counselling.
Are you aware of anything (such as a life event, personal trauma, childhood experience etc) that triggered it all off?
I believe it may have been there a long time but my 2x strokes bowel cancer in a 5 year period, made it much worse. How did it affect your personal life, family, and relationships?
My wife left me. How was your social life affected?
Unable to go out, could not afford hobbies never mind do them. If you were employed, how was this affected?
Stroke 2004 - spent 12 weeks in hospital, lost job as a commercial diver working in 20 countries.
Most importantly, how did it make YOU feel?
Stayed in bed all day
How did other people react to your behaviour/symptoms?
Often did not as never went out.
When did you decide to seek help from a medical professional?
My GP talking to me, thought that since the psych road was not for me but maybe death/bereavement counselling was for me.
Was there an event that triggered your desire to seek help?
Shut in the house 24/7 drove me up the wall.
How helpful were the medical professionals you saw?
Angry patient wanting answers, i still 6 years down the road know how and why i had a stroke.
What was the outcome of your seeking help?
Cope with my lot as i did not smoke drink and a medical every 6 months before my stroke as a dive medic.
How did treatment work for you?
Got me to not ditch the old Ken’, but park him in a safe place where i could still visit him, but also where i was a new stronger Ken.
How do you feel now?
From 134 tablets a week I had when I came home, because of Jools, Delia , Joanne and Susan [Patient Voices Project] I am now free of some of the pressures and able to again stand tall. What do you think can be done to help to reduce this stigma, as doctors, individuals, or society in general?
Listen to my needs as well as others do not put us in a box. Do you have any words of wisdom for the doctors of the future?
Listen to me. I am the expert patient, whereas you are the doctor
Best wishes
Dr Kenneth Townend PhD
Name:Susan Jane Thornton
Age:47
What condition were you diagnosed with?
Bi polar, Cyclothymia: A persistently unstable mood, involving many periods of depression and over elation. This instability usually develops in late adolescence and follows a chronic course, although moods maybe within norms for months at a time. Mood swings are usually perceived by the individual as being unrelated to life events. The diagnosis is difficult to establish without a prolonged period of observation or an unusually good account of the individuals past behaviour. Cyclothymia frequently fails to come to medical attention. The essential feature is a persistent instability of mood involving numerous periods of deep depression.
When did it all begin?
Early symptoms were recognised in childhood/adolescence. Overall diagnosis was revealed in May 2009
What symptoms did you experience?
Difficult making decisions; problems concentrating;, poor memory recall; guilt; self criticism; low self esteem; pessimism; self destructive thinking; continuously feeling sad; apathy: hopelessness; helplessness; irritable, quick temper, lack motivation; social withdrawal; appetite change; lack of sexual desire; feel neglect; fatigue or insomnia.
This disorder is common in the relatives of patients with bi polar disorder and some individuals with Cyclothymia eventually develop bi polar disorder themselves. It may persists throughout adult life, cease temporary or permanently, or develop into more server mood swings meeting the criteria for bipolar disorder or recurrent depressive disorder in rare cases.
Are you aware of anything (such as a life event, personal trauma, childhood experience etc) that triggered it all off?
Events that may have effected/triggered personal trauma include;• 5-16yrs-Turblant childhood, father
abusive and had mental health issues.
• 16-19yrs-left school and found “booze and boys”
• 19-27yrs-Married family, mother died at 27 also husband left, mother was the only one that understand and listened, that meant I didn’t have any positive reinforcement, be that a sociable or affectionate figure.
• 27-37yrs-Working full time and bringing two children up, without any support of guidance from peers.
• 37-40yrs-stress brought on drug addiction, taking stimulates to keep up with daily routine of work and family life.
• 40-43yrs-total breakdown, lost job due to inability to sustain a working life under the conditions. This involved wrecking the family home, by means of taking a knife to carpets, curtains, furniture. All in front of both children (boys were 11 & 13) Also lashing out at authority figures, being either locked up or forced to stay in doors, this was due to the fact they didn’t understand the illness that I was going through and was stigmatised as being an alcoholic. AS alcohol was my coping mechanism at the time.
• 43-45yrs-given a diagnosis that I thought was right for the first time.
Where you aware that the symptoms you were experiencing were not “normal”, or did they feel “normal” to you?
No, initially I knew things weren’t normal, but could not distinguish between the norm.
How was your social life affected?
After my husband left and had to bring up too young children by myself, while working full time, my social life became no existent. I never had time to myself brought on pressure, leading to bouts of depression. The depression became more intensified, recurring long term sickness and instability. Which finally lead to a total and utter breakdown. This involved both my children, who coped in differentways.
If you were employed, how was this affected?
I lost my job after 20 years with a local authority, at middle management level. This brought on a severe spiral of depression. Leading to being arrested and vandalising property as no one was listening, I knew I had a problem and wanted help but at this time, I wasn’t receiving any due to the stigma of being perceived as an alcoholic.
Most importantly, how did it make YOU feel?
From five years till forty three years, I was misunderstood and never listened to. From then on, when I had been given a diagnosis/my label, I was able to take a stand and understand that instead of trying to treat it, I able to learn how to live with it.
How did other people react to your behaviour/symptoms?
Peers didn’t not understand, again stigmatised me as nothing but a alcoholic, without looking deeper into the issue involved. This means looking at the person instead of the problem. The person being able to change and being able to define the issue (problem) and not the problem defining the person.
When did you decide to seek help from a medical professional?
I have been trying to seek help from both medical and professional institutes from a young age, this being after a parent passed away and was given no help by any of my peers, which then brought on the stress of bringing up a family and holding down a full time job by myself.
It was only when I had lost my job and had been binge drinking for over 3 years and had to go to hospital, in which I was told if I don’t stop I will not be able to see my sons grow up, which gave me a incentive to live and get back on track.
After realising that I need help to get over this and was given a diagnosis I could learn to live with, I dealt first my the alcohol, after 18 months of abstinence I conditioned myself to have a “on/off switch”.
This then gave me the confidence to go and seek out for all help that was out there, one of the criticisms I have was this “was trying to find the right help first time round” and the added factor that the clinicians did not listen.
Was there an event that triggered your desire to seek help?
After months of binging and self harm, my son had to take me to hospital, after the doctor advising me that I cant carry on like this, I decided to seek out all the help and advice I could.
How helpful were the medical professionals you saw?
At first (again this was over 20 years, when the establishment was set in their ways and everyone who had a drinking problem was categorized anti social and this was not actually the case) many people who use drink as a coping mechanism have mental illness before starting to abuse instead of the other way round.
What was the outcome of your seeking help?
Again firstly I was made out to be a lunatic!!! After my diagnosis, it was like a revelation. This then gave me the confidence to move forward and learn about my label and how to embrace it positively.
How did treatment work for you?
I’m still here to tell the tale and to re-educate the clinicians.
How do you feel now?
I feel better in myself and have a more stable relationship with my children, this has also had an impact on my social life as I have both new friends and colleagues to help me through, but also have gained more insight into how the patient can help themselves by helping others in certain situations like mine.
What do you think can be done to help to reduce this stigma, as doctors, individuals, or society in general?
To ask the patients more in-depth questions not as such relating to the problem in hand to try get more of an insight into the overall sphere of the patient/s involved, this means taking a more detailed look into the patient’s history. In some cases maybe speaking to a relative who has been and witnessed the patients mental state and/or deterioration. In general we could try and combat overall stigmatisation trough re-education and pressure groups, to beat, not just stigma but any sort of discrimination that involves mental health issues. By focusing on the “soon to be, new generation of doctors and councillors of tomorrow” by getting them at the core, we can not just educate them into how people may establish these mental issues but setting a ground base/work of issues to ignite fuels of concern and try to stamp it out before the patient decomposes into a serious mental state.
Do you have any words of wisdom for the doctors of the future?
• The three C’s; having the Courage to Challenge Constructively. Patients will challenge you constructively please take this as a compliment they will have a better understanding and both patient/punter/number/whatever clinicians want to call us will learn to negotiate as a team, thus proving to be more cost effective in the long term.
• We relish our own correctness” I told you so” crow over other peoples mistakes and dismiss those who challenge, those disagree with us, as arrogant, idiotic or just pain mad, that is why I am a mentalist activitist !
• Medically activated/enhanced humour, (straight talking with a hint of witty banter) this may ease the patient into giving more than they would normally digress to your average doctor/professional.
Is there anything else you would like to add?
Thank you for asking and remembering me, I hope this gives you an insight into how a patient can help, not just with telling the professional the problem they may have (self-diagnosis) by giving a better perspective of an individual with health problems, if you need to use any of the above for publication please could you ask me before hand. I wish you all great success in your future as ‘The doctors of tomorrow’
Kind Regards
Susan Jane Thornton
LISTEN (My Journey)
Twenty years, has been and gone,
Nobody listened and it all went wrong.Time after time, they said I was a drunkBy no means, I knew I wasn’t a monk.
Over and over,
They called me mad sue,Bloody hell!
What was I guna do.
Lost my job,Lost my home,
Lost my integrity too.
So I knocked on door after door,Until my knuckles were roar.
Stitches, plaster and scalp shaved too
How far was I guna go?Guess what,
Broken bones and stab wounds too.
You clinicians in there, what are you going to do,
Please, please listenIf you know what’s best for you.
That’s why you get paid so much for what you do,
Now I get paid for you to listen,And listen you will DO!
Hip hip hurray,
You have listened at last.I now know what you have subjected
me too;Bi polar, Bi polar,
You clinicians say, by heck you listened at last to my dismay.
Hip hip hurray I shall be on my way,
Learning to live againHip Hip Hurray!
By Susan Jane Thornton Transcript Scott Howells
Copyright June 2011
RESOURCES
A good website containing an overview of stigma aimed at people suffering with mental health problems:www.rethink.org/living_with_mental_illness/everyday_living/stigma_mental_illness/index.html
Journal article providing an overview of stigma, it’s effects and how it can be reduced:Byrne P. Stigma of mental illness and ways of diminishing it. Advances in Psychiatric Treatment 2000; 6: 65-72. Available to access online at:http://apt.rcpsych.org/cgi/content/full/6/1/65
Time to change campaign. Includes some real life stories from people with mental health problems. http://www.time-to-change.org.uk/ The Royal College of Psychiatrists Fair Deal Campaign. http://www.rcpsych.ac.uk/campaigns/fairdeal.aspx
All images courtesy of Microsoft Office