During my time as a mental health advocate I have spent many hours learning and discussing the ways to engage with those involved first-hand in the system. What is typically a point of contention at any advisory panel I've sat on or chaired that involves people with lived experience is the appropriate title to call them. It can be challenging having a group of 12-25 people all using a title that makes them all feel comfortable.
The most common titles I've heard mental health organizations and government use are: person with lived experience, survivor, advocate, patient, consumer, etc. However, I've heard some people take offence to one title while others asked to be described a certain way. I asked my Facebook friends, Twitter followers, friends with mental illness and users of a knowledge exchange online forum I'm a member to tell me what title made them most comfortable. I've omitted their names.
I've seen and heard a lot of people use this term. Here's what people had to say about it:
"Survivor is weird to use because its the system I feel like I survived and not the illness."
While somebody else said "I prefer survivor to the other two, but more commonly use consumer. The former is more political/radical, the latter [is] more implicated in discussions around policy."
My take: I personally agree with what the first commenter said. To me 'survivor' makes me think that I plunged into the system and made it out OK. While that may be true the term reminds me of certain things that just don't connect to mental health.
"I've been an advocate so long, that's what I go by...but not everyone's an advocate."
My take: Nobody seemed to object to using this particular term. I use it because I sit it at a lot of tables with influential people and decision makers in the world of mental health. I feel like it gives me an opportunity to use my voice in order to improve this system and certainly this blog allows me to do that too.
"I guess because I consider myself a patient for mental health issues. It feels... Right."
My take: Mental illness is an illness and we need to treat it as such, it's no different then a physical ailment. However I'm only comfortable using this term in a medical setting.
A couple people informally told me this term made them feel like they were a customer. While healthcare isn't free, the relationship between a person and their healthcare team better be a heck of a lot better then the relationship between you and the cashier at the grocery store. While on one panel we use the term 'consumer advocate' because people like it I certainly understand why others may not like it.
Person With Lived Experience:
"I prefer just being called by name, but if I had to choose it would be 'living with a mental illness'."
"Person with lived experience. I think it's the most hopeful and less judgmental."
My take: This is one of the more frequently used terms that I see used a lot and use myself. It's pretty self-explanatory and it seems to be the one people like the most.
The Last Word:
Instead of writing a conclusion like I normally do I'll give it to one of the people who responded to my inquiry; they summed it up quite perfectly.
Honestly, for me, the words do not matter. It's what people mean by using them. It doesn't matter if they use the most stigmatizing word just to convey that I have experienced a mental health issue. That's fine. We can start a conversation about that; but if they are using a label to tell me how my journey limits my ability to be a functioning member of society; that's what I what I have an issue with.
I just think -- even if you change the word -- you won't remove the stigma by using new word (if the ever changing language around intellectual disorders has taught us anything). It doesn't matter if you call me crazy, survivor, mentally ill, or anything of the sort, if you are using that label to reinforce some part of stigma.