A lived experience perspective on communication challenges in mental health
When did you first suspect you had a mental health condition? Tell us about your mental health experience
I first suspected something was amiss when I was a teenager. My closest friend noticed the marks on my arm from self-harm and expressed concern. At the time, I was unaware of the severity of my mental health struggles. The stigma surrounding mental health within my family, coupled with their opposition to seeking professional help, further exacerbated my worsening mental state.
Credit: Carrie Lee Edwards
This isolation and lack of support propelled me into a downward spiral, and delayed my journey towards recovery for many years until people came into my life who treated my mental health with respect and understanding.
What support or treatment did you receive for your mental health? If you received a diagnosis, can you tell us about that experience?
When seeking a diagnosis, I often felt misunderstood and misrepresented. Writing down my experiences, thoughts and emotions was crucial for clarifying what I was experiencing internally and effectively communicating my feelings, as it is typically hard for me to express them verbally (owing to anxiety as well as communication barriers). Especially when anxiety made verbal communication difficult or there were just too many thoughts racing, writing created a safe space where I could gather and organize my thoughts without the pressure of immediate responses or the fear of being misunderstood.
Over time, I began treating writing as a tool for self-advocacy. Bringing written notes or letters to therapy sessions or doctor’s appointments helped to bridge the communication gap and ensured that important details of my experience were not overlooked. I could also see patterns in my symptoms and emotional triggers, which became useful in tracking my mental health journey. This reflective practice also empowered me to take control of my narrative, which can be difficult when struggling with anxiety or feeling invalidated. It is a method I recommend to anyone who is facing similar difficulties with verbal communication.
Despite using this skill, I still faced challenges in advocating for my medication needs and making independent decisions. My treatment involved a lengthy process of trial and error with medications (including genetic testing to identify suitable options) that resulted in undesirable side effects and daunting medication management and discontinuations. Prioritizing my own care and advocating for myself was a substantial hurdle, especially within certain relationships (inside and outside of the family). Constantly having others hover over every decision in my mental health care was invasive and demoralizing and created more space for stigma.
“[Writing down my experiences] helped to bridge the communication gap and ensured that important details of my experience were not overlooked”
Why did you decide to collaborate as a lived experience expert in research? Why is this important to you?
My lived experience and that of my immediate family has given me a unique perspective on mental health issues and the struggles faced by individuals with severe mental illness. My husband also has a severe mental illness and has had to travel long distances to receive care, which separated him from his vital support system and caused hardships and stress for us during highly emotional and sensitive times.
I believe that sharing my experiences can contribute to research and improve other people’s lives. Indeed, education and personal stories are key for shifting societal perceptions. Additionally, including lived experience in research ensures that findings are relevant and applicable to real-world situations.
I envision a world where future generations of people living with mental health challenges can grow up without being stigmatized, and thrive in the same light as their peers, with equitable care.
What can be done to improve representation of people with lived experience in research?
Increasing funding for research that includes lived experience experts can help to improve representation in research.
Creating more accessible and inclusive research opportunities for people with lived experience is equally important. In this context, ‘accessible’ means offering virtual participation options for individuals who might struggle with in-person attendance owing to mobility issues, mental health conditions or geographical limitations. Additionally, research should offer accommodations such as plain language summaries of complex concepts, or flexible schedules.
‘Inclusivity’ could also mean intentionally recruiting people from marginalized communities or those whose voices are often left out of traditional research. For instance, a research project might invite mental health service users to co-design studies, to ensure that their insights shape participation and how the research is structured and conducted. This type of inclusion gives lived experience a powerful role in driving meaningful outcomes.
What are the potential harms of participating in research as a lived experience expert? What can be done to mitigate these harms?
From my own experience and observations, retraumatization or triggering can be a potential harm. For example, recounting personal experiences of trauma in a research setting might cause distress or bring back painful memories.
Privacy can also be impacted if participants’ identities are not adequately protected, such as when sensitive information is shared without sufficient anonymization or consent.
Finally, exploitation can happen when lived experience experts are asked to provide insights without fair compensation or recognition, or when their input is used in ways they did not consent to, such as for profit or prestige without their knowledge.
To mitigate these harms, I suggest ensuring that research protocols are ethical and respectful of participants. Adequate support and resources should be provided, such as access to counselling services during and after participation, debriefing sessions or safe spaces to process emotions. Clear boundaries and expectations between researchers and participants are also critical, including transparency about how the data will be used.
What advice do you have for someone with lived experience who is considering collaborating with researchers as an expert?
I advise doing your own research about the scientific field you will be collaborating in and choosing reputable researchers to collaborate with. Also, be clear about your boundaries and expectations, seek support from other lived experience experts or advocacy organizations and, most importantly, trust your instincts and do not be afraid to say ‘no’ if something does not feel right or would interfere with your coping strategies.
Collaborating with researchers as a lived experience expert can be a rewarding and meaningful experience. By doing your research, setting clear boundaries, seeking support and trusting your instincts, you can ensure that your participation is a positive and productive experience. Remember, your lived experience is valuable, and your contributions can make a relevant impact on the field of mental health research.
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