A lived experience perspective on symptoms knowledge and management

In retrospect, I’ve always had experiences that weren’t considered ‘normal’. I wasn’t aware of it, despite having my first severe suicidal depression when I was 18. I managed to heal from that first experience, and I thought it was a fluke. When I was about 22 years old, I helped a then-partner in their research on diagnoses for which their therapist suspected they might meet the criteria. I started to see my own experiences echoed in symptoms I was reading about and realized that maybe my experiences weren’t as ‘normal’ as I thought.

Credit: Bodi Bodenhamer

A therapist on the college campus I attended at the time helped me through my initial experience of suicidal depression. She ‘graduated’ me from therapy after about six months, when I was overall feeling and functioning much better.

As different problems started to surface later in life in conjunction with some recreational drug use and an abusive relationship, I attempted to end my own life at age 23. I don’t recall ending up in the hospital, but I was told I had been voluntarily admitted, and then became briefly catatonic while in inpatient care. I responded well to medication and was released after only a few days.

I had a therapist already, but I started on antidepressants, which triggered a cascade of problems. While cycling through the process of trying three medications — and before other diagnoses were considered — I experienced a huge array of symptoms and changes. Some of them were experiences I’d regularly had before but habitually masked, such as losing time (blackouts), hearing voices, and paranoid or grandiose thoughts. The anti-depressants I was taking at the time intensified these experiences, which were then too intense for me to hide or mask.

Other new things happened, like severe disorganization, extremely rapid and disorganized talking, and feeling the urge to cut myself, which was shocking even to me. I was involuntarily committed when a neighbor called 911. I was kept in the hospital as an inpatient for about 3.5 weeks, which I found miserable and traumatic. I then saw a psychiatrist to manage medication in addition to therapy.

I educated myself about clinical psychology and psychiatry to try to navigate the healthcare system. I’m lucky to have had some collaborative doctors as well as some very pushy, dismissive ones. The doctors who worked with me as an active participant in my own care helped me minimize medication and side effects while still maintaining my well-being and what is now ten years of recovery.

Clinical psychology and psychiatry knowledge of the lived experience is relegated to case studies that feel almost voyeuristic at times. The mindset that develops when learning about these topics as an outsider is very removed from the lived experience. I hope that bringing my experience into the processing of mental health data might shift the understanding of that data, or even change what is researched and how it’s interpreted entirely, to the benefit of people like me who are forced into the system.

Lived experience and empirical research are difficult to combine, because they are often set up as opposite forms of knowledge. But simply bringing people with lived experience into the research process and taking our feedback seriously is the only real way to start.

Both researchers and lived experience experts remaining flexible in response to that feedback will reveal more concrete ways we can be involved and our voices heard. This means exploring new ideas and methods of doing research, and new roles for lived experience experts in the process. It may also mean changing or eliminating parts of the existing process.

There is a very real danger of bringing people with lived experience in as tokens, without incorporating our voices into the outcome. We will challenge the status quo, and this is a good thing and part of the uncomfortable growth process that we are being asked to contribute to.

Those who have social power in doing and applying research, medical doctors, and policymakers should remain aware of their power. They should be brave, take risks when presenting our ideas and our concerns, and be our allies through the entire process.

“We will challenge the status quo, and this is a good thing and part of the uncomfortable growth process”

Be honest even when it’s uncomfortable, including with yourself and your strengths and limits.

Don’t be ashamed of misunderstandings or mistakes; these are opportunities to reveal issues and solutions for you because you can learn where you can best contribute to research, and for the research process because it can then better reflect your experience and your expertise, which could even create smoother paths to implementing that research and affecting the lives of others for the better.

And know that your voice matters.