Personal medicines are not like pharmaceutical medicines. They are the non-pharmaceutical strategies that people use to help them get and stay well. This research investigates how people develop and use personal medicine.
Deegan, P. (2005). The importance of personal medicine: A qualitative study of resilience in people with psychiatric disabilities. Scandinavian Journal of Public Health, 33(Supplement 66), 29-35. doi:10.1080/14034950510033345
Patricia Deegan, building on the evidence that more people recover from serious mental illness than not (2/3), turns her attention to understand how people with psychiatric disorders also demonstrate a resilience capacity within their day to day lives.
There is a relationship between the concepts of recovery and resilience. People, can be highly resilient when struggling to recover from serious mental health conditions.
Recovery is often observable through indicators such as living and working in the community in a fashion similar to that of other community members, being free of psychiatric symptoms, using or not using psychiatric services having a network of friends and/or family, and living in fully integrated housing.
Resilience, defined by Ridgway, is the capacity of people who are faced with adversity, to adapt, cope, rebound, withstand, grow, survive, and define a new sense of self through situations of adversity, including psychiatric disability. Resilience does not refer to a magical state of invulnerability.
Deegan stresses the importance for clinicians to shift their gaze from simply charting standardised recovery expectations based on individual pathology but to become more interested in understanding and enhancing the innate self-righting potential and resources of each person who comes for help. This includes becoming curious as to people’s health resources and qualities that they are utilising to promote their wellbeing.
Deegan wanted to understand resilience among a population of people who are often perceived as victims of chronic major psychiatric disorders, particularly understanding how people with psychiatric disorders demonstrated the capacity for resilience in the ways they used or did not use psychiatric medications in their daily lives. A major motivation for this study was her personal experience of schizophrenia and her concerns with the over-prescribing of medication to people.
She undertook a participatory-action qualitative study aiming to further understand the meaning of resilience to a group of 29 people with psychiatric disabilities. She involved those included in the study in the interpretation of the findings.
The 29 participants were selected from a wider pool (n= 113) of people who returned a survey to say they would be interested to participate in the study. The study sample ensured that it had racial diversity, urban / rural mix, some people who no longer utilised medication and people representing a range of diagnoses.
A little about the research participants in the study
- They had experienced significant mental health distress, ( eg diagnosed with Schizophrenia ( n=10), Bi-Polar ( n=7), Major Depression( n=9),, and Personality Disorders( n=1),
- all had been accessing community supports for many years.( n=29)
- 10 Males , 19 Females
- Lived in Kansas, USA
- Ages ranged from 20 -69
- Some experienced additional substance abuse (n=12),
- All but 3 were using medication at the time of the interview
The research questions
Participants were asked to tell the story of how they came into mental health services and what their experience with psychiatric medications was like. Additionally, they were asked;”what is the most important thing that mental health professionals should know in order to be helpful to people using medications?’
Findings
As part of their responses they spontaneously highlighted the importance that ‘personal medicine’ had in their wellbeing management. The research participants challenged the traditional notion of medication: as well as describing ‘ pill medicine’ , they also described a wide variety of personal wellness strategies and activities which Deegan has termed personal medicine. Personal medicines are self -initiated , non-pharmaceutical self- care activities and strategies that serve to decrease symptoms, avoid hospitalisation and increase personal wellness.
All of the 29 research participants identified unique types of personal medicine that they used in addition to, or in place of, psychiatric medications and discovered by study participants in the everyday context of their lives.
Personal medicine highlighted was unique to each research participants that they used they used in addition to, or in place of, psychiatric medications and fell into two broad categories: (i) those activities that gave life meaning and purpose, and (ii) self-care strategies. Both increased feelings of wellbeing and decreased/eliminated psychiatric symptoms and/or undesirable outcomes such as hospitalisation.
Activities that gave meaning and purpose came from valued roles they had such as being a parent, volunteer, student, worker etc. Even though at times these were not without stress they were useful personal medicine strategies.
Self-care strategies included; helping others, keeping busy, exercising, becoming involved in advocacy, spending time with loved ones, sex, fishing, doing math problems, shopping, changes in diet, having a good cry, being with ‘‘normal’’ people, being alone, being in nature, talking on the phone, going for a car ride, taking a day off, pushing oneself to achieve, collecting dolls, and exposure to sunlight
JOE – “I think there are a lot of other things that are medication, that are not really considered medication. There are things that you can do that changes what your body does. And it may not be medicine … I still think that one of the best mood stabilizers there is in life – maybe not for everyone but for me – is math. That stimulates your intellectual process.”
NADENE – “And I sung for a living for five years. And I was the lead singer…. And I like to make people happy…. And they would love us and in return I would love what I was doing you know? … I stopped taking them [neuroleptics] and I didn’t act up or anything because I was doing something I like.”
NANCY – “I love being a mother. I love spending time with [my kids]. I love playing with them. I love teaching them. I love putting them to bed. Being a mom is very important to me. And being a good person in the community, like volunteering like we do. My husband and I volunteer. Doing that is very important to me.”
NADENE – “If I wasn’t working my job I’d end up in a hospital or something like that. Depressed all the time. But since I’m working, I’m full time, and I’m going, going, going. I just love it you know…. It’s keep me from being in the hospital.”
TAMIKA – “Going to university… It’s stressful but it’s a kind of good stress. I mean there’s a purpose to it. A good purpose. And I think that’s why I still do it. It keeps me from thinking about other things and going to other sources [street drugs] to relieve my stress.”
THOMAS – “I found by helping others, I found out how to live for myself.”
Non-adherence with prescribed psychiatric medications was found to occur when pharmaceuticals interfered with personal medicine resulting in a diminished quality of life. Interestingly research participants reported that they did not generally disclose their ‘personal medicine’ initiatives to clinicians and clinicians did not routinely inquire about their personal medicine initiatives.
People stressed that recovery from psychiatric disorder is not simply a matter of swallowing pills. Recovery is about changing their lives, not biochemistry. Recovery is hard work and it requires personal agency, will, vision, hope, fortitude, courage, imagination, commitment, and resilience.Personal medicine is evidence of resilience in people with psychiatric disorders.
Deegan believes that when clinicians support personal medicine, resilience, and self-assessed health resources of the people who come for help, they will then be more effective partners in the journey toward health.
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