My Journey: From Patient to Researcher with Lived Experience

As a person with multiple chronic illnesses, I, Truus Teunissen, have had to deal with the problems in all aspects of my life: at home, at work, social, and societal. Although I now see myself as a citizen living life to the fullest, it took a long time, and I still struggle, to free myself from the feeling of “being the disease.” After getting involved in several patient organizations and committees, I saw that there was still much to do about meaningful and structural patient involvement in research, policy, and care practice. My drive is about caring for other people with illnesses through action research. As a PhD candidate and later as scientific researcher, I developed together with other patients a set of criteria and values. This is used in order to discuss patient perspectives in committees or platforms and for appraisal or evaluation of project proposals in health research and in health care from a patient perspective, by patients (representatives). This set of criteria and values is still in use after 12 years throughout The Netherlands. My family, friends, and co-researchers joined me on my journey to become a researcher with lived experiences. In the current main societal discourse, there are many issues to fight for when it comes to meaningful patient involvement, to living a full life despite health problems, to inclusion and justice. I still work as a guest scientific researcher, combining scientific knowledge and experiential knowledge, since investigating and understanding these issues is of paramount importance for achieving progress.