Site Update - Lived Experience Vs Comfort supporting with a topic
Hi All,
Have you ever thought about what direct lived experience means vs a willingness to support someone in a topic?
Direct lived experience - This means you have direct personal experience with a particular mental health condition. This does not mean experience with a family member or friend who is living with the mental health condition, it means you personally have lived with the mental health condition. You do not need to have a diagnosis from a medical professional. If you believe you have lived experience with the condition, then we trust you to identify yourself appropriately.
Willingness to support someone in a topic - This means you do not necessarily have lived experience, but rather a comfort with or additional knowledge on the topic that makes you feel comfortable to support members in this topic!
It may seem obvious, but up till this point weve not differentiated between these two items. And we have not updated this section of the listener sign up process for over 5 years! Today, I am excited to announce, we will more clearly differentiate between direct lived experience vs a willingness to support someone in a topic in our product. We want to give members more opportunity to find listeners who may be a good match.
Dont worry, as listeners, it is up to you to decide how you want to present your listening skills or classify your experience. You are welcome to leave one or both of these topic areas completely blank on your profiles. These are both optional classifications for you to use in any way you personally feel comfortable.
We are making some language and functionality changes in the following locations:
1. Listener sign up - currently, when you sign up to be a listener the following option is presented:
Old text/ Header: area of expertise
Old Text/ Below topic list: OPTIONAL: Select areas that you have expertise, experience, or real interest in supporting. It is better to have a few key areas that you really care about, than it is to have many areas that you dont really care about.
Moving forward, the listener sign up will read like this:
Updated text/ Header: Your lived experience
Updated Text/ Below topic list: OPTIONAL: Some members like to talk to listeners with lived experience. Lived experience means that you have personal experience with a particular mental health condition. Select any topics that you have lived experience in.
Add we will add an additional topic section to Listener sign ups! :
Header Text: Topics I feel comfortable supporting someone with
[Insert same list of topic categories with check boxes]
Below Topic list text: Please share topics you may not have direct lived experience with, but you feel comfortable talking to someone about.
2.Browse listeners
We need browse listener search function to mimic changes made to listener profile sign up re direct lived experience vs topics a listener is comfortable supporting in.
Remove topics & change language to Direct Lived Experience
Add hover text/ explanation text: Direct Lived Experience indicates that the listener has direct lived experience with a specific mental health condition or topic.
Functionality: This search function should link directly to what the listener shares during the sign up process.
Add additional drop down Comfort with topic
Add hover text/ explanation text: Comfort with a topic indicates that the listener does not have direct lived experience with the topic but is comfortable supporting in this topic.
Functionality: This search function should link directly to what the listener shares during the sign up
3.Listener profiles
We need to update the listener profile page (on mobile & desktop / screen grabs attached).
We need to remove categories and add two distinct sections:
Direct Lived Experience
Comfort with Topic
Functionality for both should link directly to what Listeners report during Listener sign up and then manage from their settings page.
4.Listener Settings page - option to change/ tweak
Similar to the listener profiles update - we need to divide into two categories:
Direct Lived Experience
Add explanation text: Direct Lived Experience indicates that you have personally experienced the mental health condition.
Comfort with Topic
Add explanation text: Comfort with Topic indicates that you do not have direct lived experience, but you are comfortable supporting members with this topic.
@Laura Is this only being done with mental health conditions? If so, why only mental health conditions? Lived experience can be really useful for other topics as well.
@AffyAvo
This is a good point! I think there may be the opportunity to update this beyond mental health conditions in the future. For now, we will launch with this because it more closely aligns with existing site functionality (like the list of topics a listener can choose from).
@Laura There are currently 37 topics. Most of them are not a mental health condition. Also, some are symptoms of a mental health condition (ie. self-harm, alcohol/drug use). How many topics are planned to be included initially?
@AffyAvo I really love this idea but when is the update planned for?
@Laura
I am a bit confused by this are you saying that you have to share what you have been through because yes it is fine for me but for some of us we may not want to share our experience but we can help out with those topics. Some listeners signn up and have no experience on the topic but they learn based on mentors, and doing trainning. would this mean for teams and stuff that this would have a factor in this it is just a major change and a little bit confusing since I have been here since november. Just that it could be uncomfortable for some to list that they have experienced these things that is my only worry about this. Some people may not have these mental health conditions but could of delt with a loved one that has it. For example for me I have seen someone that is struggling with OCD so is that a lived experience or not so it is just feeling like a grey area for me. Sorry if my imput might of overstepped I do not usually comment on these.
@Kate @Jill7cups
@KarrotCake Sharing your own personal experience is completely optional. You will be able to put down topics you are comfortable speaking about but dont have to put any lived experience if you're not comfortable sharing. This will be listed as 'Comfort with topic.'
@Kate
Okay that makes sense I was skimming through it going in between classes I see what is now and yes that makes sense
@Laura finally theirs tons of areas i have direct experience trauma SH and disability this is why i chose these 3 for forum supporter highly passionate about these topics very close to my heart got direct experience in a few otyher topics too but these 3 top my list so excited for this update
Regardless of what 7 cups does for the topic options, I have a huge problem with this definition:
"Direct lived experience - This means you have direct personal experience with a particular mental health condition. "
This is suggesting that many of the experiences I, as well as others have gone through in life are not direct lived experiences. For a site that encourages validation I'm really disappointed in the definition being used.
I am also concerned what the effect will be by limiting sharing what topics a listener has a direct lived experience with as proposed. In the past there have been too many listeners who feel like only those with a mental illness 'deserve' to get support on 7 Cups. When special attention is given to mental illness topics and not others, this can fuel that mentality.
@AffyAvo is the issue with the definition the ending part? Would it make a difference if it was worded as "Direct lived experience - This means you have direct personal experience with a particular topic." (Or something similar)
I don't think it was meant to say that if you don't experience a mental health issue, that you don't have lived experience in anything, nor was it meant to say mental health is more important. I think it was just a wording choice to try to summarize the topics, which I'm assuming are going to be all the exact same as we already have (which obviously includes non-mental-health topics), just distinguishing if a person has gone through it themselves or would just be comfortable providing support, that's all. Could use a wording change if we're going to properly sum up the options, but I don't think it was meant to be a slight at all.
@TaranWanderer Yes, you have it. I don't think it was just a mistake though, as Laura mentioned earlier, only mental health conditions are planning to be included.
@AffyAvo the way I read it, it's possible she was confused and thought we wanted more categories added (in addition to the existing ones). The main post only talked about changing the headers and what it was called, and sort of just putting two streams where you could list things, not changing the options to choose from. Possibly a poor word choice to use mental health condition, but I didn't get the impression the actual topic list was changing. Think that would've been mentioned in the main post and they would have said the new list options, but all that was said was some language changes.
@AffyAvo
Hi Affy!
Upon discussion with the team, we have decided we can add some of the most common additional topics to the list. As you have pointed out it would be hard to do that given the long list of potential topics.
But we could do a survey for listeners/ members and see what the top 10 are.
What do you think of this approach?
@Laura I would prefer to see that than just mental health conditions.
I don't understand why it's not possible to have a long potential list of lived experiences though, just as there are for support topics.
Also, when you go with the most common, typically those are also the easiest ones for people to already find those with lived experiences simply by probability. For example, in my life I have come across many others who have asthma, it's common so in a typical classroom it's pretty likely that even just by asking I can find someone else who has it. When it comes to HAE though, it's not likely I will find someone else just by getting a general population together and asking. The only time I have come across others with HAE is in HAE support groups, at the rare disorders blood clinic and at HAE informational events. The same will be true at 7 Cups. There are many people here with depression, anxiety or that self-harm. Almost everyone likely has some experience with Student Life. There's a pretty good chance that someone who has one of those topics listed also has experience. For someone with schizophrenia (which I thought was a topic, it's not even listed though) or a perinatal mood disorder, they aren't so likely to come across a listener with a lived experience as these are more rare.
So of the topics that people can list, I think it would actually be more helpful to have the 10 least common topics to be included as possible lived experiences, rather than the 10 most common topics.
@AffyAvo I feel like having the least common ones as options would also be the least helpful, because you're going to be able to reach a smaller audience with it. Sure, some things are really common, but that also means there's going to be a higher number of members who are looking for support on those things. Practically, it makes more sense to list ones that will be the most useful to the most people. Besides, for any less common ones, you know anything a listener puts in their bio can be found using the keyword search, so someone looking for something specific or uncommon can search that way and find what they're looking for just the same.
Hey, @Laura this is such a great idea!
These updates sound awesome. @Laura
@Laura
I really like this idea. I think it will really be helpful for members and listeners alike.
I'm happy to hear this.
Oftentimes, I stumble upon listeners who have so many categories listed on their profile while it's up to the listener to pick what they want to listen to, it's also concerning because there are times (especially when I'd have a mock chat with them for their VL) where they admit that it's just their first time handling such chat or they didn't expect that it'd be that hard to handle such chat or they're not that knowledgeable about the topic. On the other hand, members end up being frustrated when they've expected that the listener should be able to understand their issue but turns out they're not being validated for what they're going through.
I hope that by having this update, it'd be very helpful for both listeners and members. If this becomes successful, I'm also hoping to see more topics outside mental health being covered 
Inner peace is the new success.
I can't see myself advertising my lived experience here.
I've never found that providing emotional support at 7 Cups (or anywhere else) depends on knowledge of any particular topic. And in any case, the topic often changes significantly during a chat.
Calling it lived experience is slightly inaccurate, I think. All that will happen is that people who have shared a broad diagnostic label will be grouped together, even if their actual experiences have been very different. People who really do have shared experience—for example, of other family members who don't understand their illness—will be separated by diagnostic label.
Any increased emphasis on topic knowledge will tend to make members and guests expect advice, it seems to me, and will tend to make inexperienced listeners more likely to hand it out.
My feeling is that identifying lived experience stigmatizes mental illnesses, as if they are all lifelong conditions, when the reality is that many people who suffer a mental illness completely recover from it. A listener who has completely recovered from an illness should not be asked to label themselves with it, in my view.
Treating mental and physical conditions differently just seems outdated.
When I chat to people here, I always try to avoid making the conversation about me. Advertising my lived experience would make this more difficult. As @cloudySummer has already pointed out, some members and guests target listeners, and I agree that listeners who disclose this kind of information will be at greater risk.
To answer the original question, yes I've thought about what direct lived experience means. I've been trying to think of some positive things to say about this idea, but none have come to mind. I don't see any in the original post or in the discussion so far. It would be good to know what the purpose of this is, and how success will be measured.
Charlie
@RarelyCharlie
What a superb post! You covered all the points I wanted to make.
I will add one though as an example. In the Bipolar Support sub-community, where I am currently part of the team, we are working hard to get rid of stigma and encourage listeners that do not have bipolar to join.
Any listener can provide good, helpful, kind, emotional support by using active listening skills. They do not have to have bipolar themselves or even really know much about the topic, they just have to be keen and active. But this change to the topics and definition of 'experience' can surely only increase stigma and demarcation, maybe even one-up-manship too?
@palmtreesnrainbows
Listening .... One Step At A Time
@MistyMagic
well said misty
@RarelyCharlie
Personally, I disagree. I think there is some use to letting members searching for a listener know if the person has been through it themselves or is just a kind ear. I don't think it matters in terms of being able to provide support, but I've had experiences where there was a disconnect because the listener didn't know what it felt like. Other times it didn't matter. It would just be a nice option depending on what the member is looking for.
Literally all people's experiences of anything are going to be different and unique to themselves. That doesn't mean we can't say we've had experience with it? I'm not sure your point there. It's no different than the current system of listing categories. One person who lists "depression" as a topic they would talk about is going to be vastly different than another, lived experience or not. People are different. And it's hardly a diagnostic label, it's more just a different way to say you'd be comfortable talking about the topic?
I don't get the impression in the slightest that lived experience implies you're giving yourself a label, that you're always affected by it (can't be fully recovered), or that it can't just be a thing of the past. Is there really anything wrong with saying "yes I've had personal experience with that"? I see no stigma in that. It's not really a label?
I see nowhere that mental and physical conditions are being treated differently with the new options. It could use a wording change but that's all.
If your listener style is less about you, then you don't have to put anything in the lived experience category if you don't want? We shouldn't have to live based on the fear of being hurt--aka not do things just because others could use it in bad ways. The "bad guys" shouldn't be dictating what we do or not. We should be able to do new things and take care of the attackers as they come. There are going to be hurtful people no matter what, why should we let it stop some people having the option, if they choose, to list what they have experience with? Do the potential cons really outweigh the potential benefits (or even potential neutrals)? I don't think so. Listing things is optional and always changeable. If it's not working out for someone, they can change it.
I personally like this idea. I think it could be useful to members based on what they're looking for, and could help people really think about what they're listing, even if they choose to not put anything in the lived experience section, instead of just listing all of the topics (which I've seen). I think when I'm using my member account, I would definitely use that extra search option for some topics, and might not care for others. Anyone can provide support on any topic, I believe that, but I also know there are times when all you really need is mutual understanding, someone to say "I've been there too". It can mean a lot to some people, for others it won't matter. But having the option to search for listeners based on your personal needs would be nice in my opinion. It is, after all, about the members and those in search of support.
@RarelyCharlie ive just started the first peer worker training module and one thing i noticed is that the empasis seems to be on mutual sharing with one another feelings and experiences where active listening is just more or less reflecting back to the person what theyve said in various ways im curious what you think i just started and its not that i dont like it or think its good only that it kind of goes against the strictly reflective principles of active listening or active listening plus something extra i wonder how thatll play out
@Laura I think this a good idea. Since having Lived Experience can really help someone who struggling with this. I have a concern though...
I think that we need to have a bigger scale of topics and it's important we keep BPD as an topic as well as personality disorders. Since there is limited help with BPD 7cups has been a place alot of people with BPD turn to. That being said we need to be careful as to what we share because we can be a target. I mean as a listener we are told not to share too much personal stuff so now that's say I share I'm bpd and so fourth what if other listeners use this against me ? Like for example I'm too emotional for a leadership role ? This is just an example but the point is there are people on here who do intend to hurt others and find fault. I have faced alot of target and abuse because of my LGBT status which I don't share because of it. I think before we go putting Lived Experience we need to be putting things in place to protect us. I'm very open with my bpd but with other things it can lead to abuse. And that a huge concern. Being abuse by fellow members because you trans or gay / lesbian can be very disappointing. Just a thought