A lived experience perspective on sharing personal information

I first started noticing signs of a mood disorder around the age of 12. However, at the time mental health was not really something I knew about. I recall having thoughts of something being ‘wrong with me’.

Credit: Erin Murray

I have been in and out of therapy since I was about 7. However, mental health was not something that was talked about in my family, so I was very unaware of what therapy actually was.

As I got older and my symptoms kind of came to a boiling point (when I was around 16), I was very reluctant to tell anyone about my mental health. I thought that what I was experiencing was making me ‘weak’ and I felt ashamed. When I was 17, I was hospitalized and given the diagnoses of major depression and generalized anxiety, and was given medication.

I am 23 now and I have continued therapy. However, I decided to discontinue the use of medication about 5 years ago.

I am part of a research study on alcohol use. I have been in recovery since February of 2021. I decided to collaborate with this study because I am a firm believer that education can only help someone to understand certain topics to a limited extent. Looking at past research, theories and articles cannot provide someone with a true understanding of what people who have gone through mental health challenges are actually thinking. I feel it is important to either have experience or consult people who do have experience in subjects regarding mental health. This lived experience helps researchers to gain a more comprehensive perspective on what they are trying to study.

By participating in research as a person with lived experience I can provide a deeper look into how I view things, and give researchers a better understanding of how their target population might think.

“I can provide a deeper look into how I view things, and give researchers a better understanding of how their target population might think”

Sometimes things that are very invasive are talked about during research meetings, which might be activating. There are times when we talk in detail about our days in active addiction to give researchers a better understanding of the mindset of the population they are surveying. We always have the option to not partake in any discussions we do not feel comfortable in. However, sometimes hearing other people’s experience can be activating.

Another potential harm I was made aware of by the study I participated in was other people finding out about my recovery identity. For example, some participants might not be comfortable with potential employers, colleagues, friends or family members knowing about their lived experience. It was not a concern to me, but some people are more reserved about their identities and this potential harm is something to consider.

Do not be intimidated by the academic or clinical setting!

The atmosphere in my study has been more than welcoming and friendly and it has been a great experience. It was a little daunting at first but remembering that I was only there to give my personal perspective was helpful in battling some of the imposter syndrome.

Another big thing is checking in with yourself and making sure you have the capacity to dig into some of these more personal areas. In the study I am participating in, the researchers have not asked us directly to go into detail about our time in active addiction, although a few of us have discussed it because we felt it was pertinent to a comprehensive understanding of the experience. It is important to note that sharing is not required and to make sure you are in a good headspace to either discuss things like these or hear others’ experiences.

Lastly, ask questions! Do not be afraid to ask for clarification if you don’t understand something. Sometimes researchers get in a pigeonhole of talking to others in academia and forget lived experience experts need a more simplified version. They will more than happily stop and give it to you!