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PATIENTS IN THE SPOTLIGHT

Issue #2: Telling and Becoming the Story

Last month, we initiated some thoughts on the power of storytelling and narrative in the world of patient advocacy. We looked at how people are drawn to stories, especially when they resonate with us, or recall something which triggers one or more of our senses and feelings. Patient stories can be about both health and/or emotions, which means audiences are not only more likely to listen, but also more likely to understand and empathize with them… possibly even want to intervene and react to the story. However, telling a personal story can sometimes even have  a  more therapeutic effect on the patient as the storyteller. The story itself can potentially be a vehicle for building inner strength and mental health, because it affects and increases levels of creativity, presentation, resilience and other life skills.

In order to gather fresh ideas stemming from the Youth Group’s roleplay performance at EPF Congress, we decided to interview the members of the group to look back at the experience nine months on. When acting out the roleplay scenarios – all of which involved at least one patient and one or two other stakeholders such as medical staff, parents, employers and public officials - many of them were reminded of their own past experience: memories of situations they had lived through, and situations which may have potentially happened to them. They all had to act out “patient” and “non-patient” roles:

“At first I was really anxious as I have never done this before (…) Then I found it much easier than I was expecting it to be. (…) It showed the passion that we have for advocacy not just as a Youth Group, in the roles as well.” (Andreas)

It is almost like a form of therapy, we went into great depths to understand the motives of each stakeholder, and examine the root behind their reactions.” (Ivett)

“When rehearsing the roleplays, I felt nervous about being on stage but I also felt a rush of adrenaline come through me. It was a great way to challenge myself and to try something a little daunting.” (Marcus)

We decided to perform the patient stories by improvising as opposed to learning lines off traditional scripts. Improvisation, a very popular theatre format especially among non-professionals, involves spontaneous acting and no line learning. Being spontaneous and less attached to written text can potentially result in less mental pressure, especially for first time actors who may also be dealing with stage fright.

We needed to improvise together and push the characters and the scenes in whatever direction we felt was honest and true to us. And although we had a plan, we would never know what will come out at this particular moment on the stage […] It was like telling a story that is happening right now and you do not know if you are telling it or the story is telling you” (Yolita)

“Telling a story that is happening right now” or improvising a play knowing that the line order can change and having to rely on and trust the other characters on stage, can increase your flexibility and adaptability. Acting for the first time can often translate to stepping out of your comfort zone: again, something which not only makes us feel stronger, but also more relaxed and at ease. Ultimately, increasing your awareness  of others can have a positive effect on your people skills, a benefit which goes for non-patients too.

While acting and focusing more on lines and story structure, the members of the Youth Group acquired stronger awareness about the other “non-patient” parties involved. This isbecause they all tried out different roles, and had the challenge of portraying both the patient and the non-patient perspective.

“I was very attached emotionally while playing the mother of a patient who encourages her daughter to dare to talk about her invisible illness during her job interview, and to believe in herself. I was in that position before (as the patient, not the mother). It was like looking at the situation as an outsider and then giving advice and encouragement to myself which is usually muted by my doubts” (Ivett).

“I tried to be emotionally detached, but the topics are close to home and it is difficult not to re-experience the discrimination and the anger that it evokes” (Yolita). 

“In the scenario with the job interview I found myself questioning whether in real life I should hide or disclose my condition and yes, I can say that in some of the interviews I did hide my condition due to the fear of rejection.” (Andy)

“One of the roleplays brought out a trauma buried deep down from the times I had a liver disease but no-one yet knew why: the first guesses were all infectious diseases. I only had the "danger of infection" label on me for 2-3 weeks, I cannot imagine having it for a lifetime, especially if it comes from a lack of information and is non-rational.” (Ivett)

It was very clear from the interviews that every Youth Group member went through a series of mixed feelings, ranging from frustration and empathy, to emotional attachment, to deeper analytical awareness. Telling our own stories may also make us emotional and vulnerable: but we become stronger when we speak out: “I felt humble and proud, because the messages that we were sending were for respect, dignity, humility“ (Yolita). Storytelling also boosts public speaking skills, creativity and personal self-confidence.

I really do believe in the strong potential that theatre has to offer in the world of advocacy, and even more so within the fields of healthcare and patient advocacy. Being a patient can sometimes be very lonely: and conditions are so specific, and (at times) uncommon, it can be difficult to manage especially if surrounded by people who do not understand it: this can make you feel alone.Therefore, the sense of community which theatre and general storytelling tends to bring out, is the key element here. It is about being surrounded by people who share something and support you, people who understand your stories because it helps them relate to their own, or similar. People who with their love and support are there to remind you that you are not alone.