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How Social Media Is Changing the Way We Manage Chronic Diseases | Josh Robbins | TEDxNashvilleSalon


so in February 2012 I announced to the

so in February 2012 I announced to the world as well as my friends that I was

world as well as my friends that I was

world as well as my friends that I was living with HIV on Facebook between

living with HIV on Facebook between

living with HIV on Facebook between family photos from friends in the

family photos from friends in the

family photos from friends in the timeline and a funny cat meme a couple

timeline and a funny cat meme a couple

timeline and a funny cat meme a couple weeks later I released a recorded live

weeks later I released a recorded live

weeks later I released a recorded live video of me actually being told at

video of me actually being told at

video of me actually being told at Vanderbilt University HIV vaccine clinic

Vanderbilt University HIV vaccine clinic

Vanderbilt University HIV vaccine clinic that I was HIV positive and now five and

that I was HIV positive and now five and

that I was HIV positive and now five and a half years later the video is done

a half years later the video is done

a half years later the video is done pretty good but I have had 1.5 million

pretty good but I have had 1.5 million

pretty good but I have had 1.5 million minutes watched a video content on

minutes watched a video content on

minutes watched a video content on social media about HIV my goal is and

social media about HIV my goal is and

social media about HIV my goal is and was to just make HIV something that

was to just make HIV something that

was to just make HIV something that we’re not scared to talk about online

we’re not scared to talk about online

we’re not scared to talk about online something that may not be cool but may

something that may not be cool but may

something that may not be cool but may not be uncool makes sense now I have a

not be uncool makes sense now I have a

not be uncool makes sense now I have a reach on social media of 65,000 people

reach on social media of 65,000 people

reach on social media of 65,000 people and that’s from Facebook fans and

and that’s from Facebook fans and

and that’s from Facebook fans and followers and Twitter followers and

followers and Twitter followers and

followers and Twitter followers and Instagram and well and the YouTube

Instagram and well and the YouTube

Instagram and well and the YouTube subscribers are really foe but I have

subscribers are really foe but I have

subscribers are really foe but I have 1.5 million minutes watched of content

1.5 million minutes watched of content

1.5 million minutes watched of content so it equals out the reason why I do

so it equals out the reason why I do

so it equals out the reason why I do this on social media and I advocate for

this on social media and I advocate for

this on social media and I advocate for HIV is because when I was diagnosed I

HIV is because when I was diagnosed I

HIV is because when I was diagnosed I looked online and I just wanted to find

looked online and I just wanted to find

looked online and I just wanted to find somebody like me and I wanted somebody

somebody like me and I wanted somebody

somebody like me and I wanted somebody to tell me that I wasn’t gonna die and I

to tell me that I wasn’t gonna die and I

to tell me that I wasn’t gonna die and I couldn’t find that and so I started a

couldn’t find that and so I started a

couldn’t find that and so I started a blog and I on that blog I named it I’m

blog and I on that blog I named it I’m

blog and I on that blog I named it I’m still Josh and I thought that it was

still Josh and I thought that it was

still Josh and I thought that it was literally the most

literally the most

literally the most brilliant smartest thing that I’ve ever

brilliant smartest thing that I’ve ever

brilliant smartest thing that I’ve ever done until like six months later and

done until like six months later and

done until like six months later and then I’m like I am talking about myself

then I’m like I am talking about myself

then I’m like I am talking about myself in third person all the time and this is

in third person all the time and this is

in third person all the time and this is getting pretty bizarre but the reason

getting pretty bizarre but the reason

getting pretty bizarre but the reason why I started the blog was because I

why I started the blog was because I

why I started the blog was because I wanted people in this town in this city

wanted people in this town in this city

wanted people in this town in this city and in the South that when they got the

and in the South that when they got the

and in the South that when they got the news on the worst day that they have

news on the worst day that they have

news on the worst day that they have ever had I wanted them to not feel alone

ever had I wanted them to not feel alone

ever had I wanted them to not feel alone and so after about six months the blog

and so after about six months the blog

and so after about six months the blog became actually less about me and became

became actually less about me and became

became actually less about me and became more about what you see on the screen

more about what you see on the screen

more about what you see on the screen which is issues related to HIV so news

which is issues related to HIV so news

which is issues related to HIV so news and advocacy and and that sort of thing

and advocacy and and that sort of thing

and advocacy and and that sort of thing but there has always been this element

but there has always been this element

but there has always been this element on my blog that I wanted to encourage

on my blog that I wanted to encourage

on my blog that I wanted to encourage people that were newly diagnosed and so

people that were newly diagnosed and so

people that were newly diagnosed and so you can kind of imagine or try to put

you can kind of imagine or try to put

you can kind of imagine or try to put yourself in that position on that day

yourself in that position on that day

yourself in that position on that day when you get the worst news that you

when you get the worst news that you

when you get the worst news that you have ever heard and so you just want

have ever heard and so you just want

have ever heard and so you just want somebody to tell you that it’s gonna be

somebody to tell you that it’s gonna be

somebody to tell you that it’s gonna be okay and so that’s what I’ve been trying

okay and so that’s what I’ve been trying

okay and so that’s what I’ve been trying to do but I want to share something with

to do but I want to share something with

to do but I want to share something with you guys that I normally don’t share and

you guys that I normally don’t share and

you guys that I normally don’t share and it’s because these moments are deeply

it’s because these moments are deeply

it’s because these moments are deeply personal between me and some of the

personal between me and some of the

personal between me and some of the followers on social media and it’s a

followers on social media and it’s a

followers on social media and it’s a moment that is very humbling but also

moment that is very humbling but also

moment that is very humbling but also inspiring at the same time here’s an

inspiring at the same time here’s an

inspiring at the same time here’s an actual message that I just received two

actual message that I just received two

actual message that I just received two weeks ago from one of the followers in

weeks ago from one of the followers in

weeks ago from one of the followers in social media he said I was really

social media he said I was really

social media he said I was really depressed after my diagnosis I found a

depressed after my diagnosis I found a

depressed after my diagnosis I found a lot of hope in your blog I wouldn’t be

lot of hope in your blog I wouldn’t be

lot of hope in your blog I wouldn’t be in the open telling the world I’m not

in the open telling the world I’m not

in the open telling the world I’m not ashamed of being HIV positive if it

ashamed of being HIV positive if it

ashamed of being HIV positive if it weren’t for you the reason why I share

weren’t for you the reason why I share

weren’t for you the reason why I share this with you is nothing to do with me

this with you is nothing to do with me

this with you is nothing to do with me at it it actually has nothing to do with

at it it actually has nothing to do with

at it it actually has nothing to do with me it’s to show you the impact that

me it’s to show you the impact that

me it’s to show you the impact that somebody can have to the world and to

somebody can have to the world and to

somebody can have to the world and to others just by trying to be honest and

others just by trying to be honest and

others just by trying to be honest and talk openly about a chronic condition

talk openly about a chronic condition

talk openly about a chronic condition that they have so much so that besides

that they have so much so that besides

that they have so much so that besides the hundreds of messages like this that

the hundreds of messages like this that

the hundreds of messages like this that I receive

I receive

I receive I’ve also received about 15 that have

I’ve also received about 15 that have

I’ve also received about 15 that have stopped me in my tracks every time and

stopped me in my tracks every time and

stopped me in my tracks every time and they’re from people just like us in this

they’re from people just like us in this

they’re from people just like us in this room that are newly diagnosed though

room that are newly diagnosed though

room that are newly diagnosed though with HIV and that are on the verge of

with HIV and that are on the verge of

with HIV and that are on the verge of ending at all they’re contemplating

ending at all they’re contemplating

ending at all they’re contemplating suicide and although on my blog I tell

suicide and although on my blog I tell

suicide and although on my blog I tell them I’m not a doctor I’m not a

them I’m not a doctor I’m not a

them I’m not a doctor I’m not a therapist and I can’t give you any

therapist and I can’t give you any

therapist and I can’t give you any medical advice or legal adviser

medical advice or legal adviser

medical advice or legal adviser financial advice they still want to

financial advice they still want to

financial advice they still want to share that piece of them selves with me

share that piece of them selves with me

share that piece of them selves with me and at about 15 times people have told

and at about 15 times people have told

and at about 15 times people have told me that they have chose not to commit

me that they have chose not to commit

me that they have chose not to commit suicide because of something on the blog

suicide because of something on the blog

suicide because of something on the blog or in social media where they just see

or in social media where they just see

or in social media where they just see me trying to live well so the impact

me trying to live well so the impact

me trying to live well so the impact that patients can have really the impact

that patients can have really the impact

that patients can have really the impact that people like us can have on others

that people like us can have on others

that people like us can have on others just by being open and honest is pretty

just by being open and honest is pretty

just by being open and honest is pretty amazing but again it’s not about me and

amazing but again it’s not about me and

amazing but again it’s not about me and I’m gonna prove it to you and I really

I’m gonna prove it to you and I really

I’m gonna prove it to you and I really do believe that it’s not about me it’s

do believe that it’s not about me it’s

do believe that it’s not about me it’s not anything special that I’ve done

not anything special that I’ve done

not anything special that I’ve done because we can test it by going to other

because we can test it by going to other

because we can test it by going to other health conditions and other bloggers and

health conditions and other bloggers and

health conditions and other bloggers and patient advocates online the first one

patient advocates online the first one

patient advocates online the first one let’s just say an HIV is Bruce Richmond

let’s just say an HIV is Bruce Richmond

let’s just say an HIV is Bruce Richmond now Bruce is somebody that is one of the

now Bruce is somebody that is one of the

now Bruce is somebody that is one of the coolest HIV advocates around because he

coolest HIV advocates around because he

coolest HIV advocates around because he is helping spread a message that is

is helping spread a message that is

is helping spread a message that is mind-blowing and life-altering and I

mind-blowing and life-altering and I

mind-blowing and life-altering and I really mean that and the message is the

really mean that and the message is the

really mean that and the message is the hashtag you equals you or just you the

hashtag you equals you or just you the

hashtag you equals you or just you the equal sign you that you see it on my hat

equal sign you that you see it on my hat

equal sign you that you see it on my hat and it’s undetectable equal son

and it’s undetectable equal son

and it’s undetectable equal son transmittable and basically the message

transmittable and basically the message

transmittable and basically the message is pretty simple in its science space

is pretty simple in its science space

is pretty simple in its science space that if somebody is has an undetectable

that if somebody is has an undetectable

that if somebody is has an undetectable viral load and they’re on antiretroviral

viral load and they’re on antiretroviral

viral load and they’re on antiretroviral therapy which is the drugs that we take

therapy which is the drugs that we take

therapy which is the drugs that we take every day and they reach that

every day and they reach that

every day and they reach that undetectable level for six months that

undetectable level for six months that

undetectable level for six months that they are not going to transmit HIV to a

they are not going to transmit HIV to a

they are not going to transmit HIV to a sexual partner

sexual partner

sexual partner without a condom that’s insanity

without a condom that’s insanity

without a condom that’s insanity but it’s factual it’s crazy but it’s

but it’s factual it’s crazy but it’s

but it’s factual it’s crazy but it’s science and Bruce is out there sharing

science and Bruce is out there sharing

science and Bruce is out there sharing that message and it is transforming the

that message and it is transforming the

that message and it is transforming the lives of people living with HIV across

lives of people living with HIV across

lives of people living with HIV across the world really and why is that well

the world really and why is that well

the world really and why is that well because when you are diagnosed with HIV

because when you are diagnosed with HIV

because when you are diagnosed with HIV you are told that your infectious and

you are told that your infectious and

you are told that your infectious and that you have a viral load and that

that you have a viral load and that

that you have a viral load and that you’re gonna transmit to somebody when

you’re gonna transmit to somebody when

you’re gonna transmit to somebody when if you ever have sex again and this

if you ever have sex again and this

if you ever have sex again and this message is sharing the facts that we

message is sharing the facts that we

message is sharing the facts that we know that we are not transmitting that

know that we are not transmitting that

know that we are not transmitting that we that we won’t transmit and it really

we that we won’t transmit and it really

we that we won’t transmit and it really gives us the power to feel like we can

gives us the power to feel like we can

gives us the power to feel like we can love again and it gives us the power to

love again and it gives us the power to

love again and it gives us the power to feel like that we deserve to be loved

feel like that we deserve to be loved

feel like that we deserve to be loved and Bruce is sharing that message across

and Bruce is sharing that message across

and Bruce is sharing that message across social media and right now it has been

social media and right now it has been

social media and right now it has been that message has been endorsed by over

that message has been endorsed by over

that message has been endorsed by over 300 organizations including UN aids

300 organizations including UN aids

300 organizations including UN aids last week which is amazing and it’s

last week which is amazing and it’s

last week which is amazing and it’s across every continent and 11 countries

across every continent and 11 countries

across every continent and 11 countries and seven languages and it’s all because

and seven languages and it’s all because

and seven languages and it’s all because this one advocate decided to make this

this one advocate decided to make this

this one advocate decided to make this an important message to share the next

an important message to share the next

an important message to share the next person that is in HIV that is doing

person that is in HIV that is doing

person that is in HIV that is doing amazing work is Maria yeah I always mess

amazing work is Maria yeah I always mess

amazing work is Maria yeah I always mess up that last part Makia or Maria HIV if

up that last part Makia or Maria HIV if

up that last part Makia or Maria HIV if you go to Facebook and just type that in

you go to Facebook and just type that in

you go to Facebook and just type that in she’s somebody that is an amazing friend

she’s somebody that is an amazing friend

she’s somebody that is an amazing friend of mine but she runs the largest HIV

of mine but she runs the largest HIV

of mine but she runs the largest HIV international group ever I mean she is

international group ever I mean she is

international group ever I mean she is doing it she’s also somebody that can

doing it she’s also somebody that can

doing it she’s also somebody that can make really corny phrases like life is

make really corny phrases like life is

make really corny phrases like life is beautiful I think she said that recently

beautiful I think she said that recently

beautiful I think she said that recently in a video she can make that sound like

in a video she can make that sound like

in a video she can make that sound like it’s really awesome I try to do it and

it’s really awesome I try to do it and

it’s really awesome I try to do it and it sounds not awesome and then also just

it sounds not awesome and then also just

it sounds not awesome and then also just to mention him is Jack Mac and Ralph

to mention him is Jack Mac and Ralph

to mention him is Jack Mac and Ralph beside Maria she is doing great work

beside Maria she is doing great work

beside Maria she is doing great work this is kevin maloney

this is kevin maloney

this is kevin maloney kevin maloney is somebody that is

kevin maloney is somebody that is

kevin maloney is somebody that is he’s like the CNN of HIV advocacy and

he’s like the CNN of HIV advocacy and

he’s like the CNN of HIV advocacy and what I mean is when breaking news

what I mean is when breaking news

what I mean is when breaking news happens or comes out with The Associated

happens or comes out with The Associated

happens or comes out with The Associated Press Kevin is gonna posted it on his

Press Kevin is gonna posted it on his

Press Kevin is gonna posted it on his Facebook page and Twitter but he’s

Facebook page and Twitter but he’s

Facebook page and Twitter but he’s responsible for the no shame about being

responsible for the no shame about being

responsible for the no shame about being HIV positive campaign that has shared

HIV positive campaign that has shared

HIV positive campaign that has shared over 800 people’s individual stories on

over 800 people’s individual stories on

over 800 people’s individual stories on social media about them living and

social media about them living and

social media about them living and thriving or not thriving with HIV he

thriving or not thriving with HIV he

thriving or not thriving with HIV he jokes to me and says that I’m like the

jokes to me and says that I’m like the

jokes to me and says that I’m like the TMZ of HIV advocacy because I like

TMZ of HIV advocacy because I like

TMZ of HIV advocacy because I like things to be a little bit spicy in order

things to be a little bit spicy in order

things to be a little bit spicy in order to get to my vlog I like to think of

to get to my vlog I like to think of

to get to my vlog I like to think of myself more as like the MTV News with

myself more as like the MTV News with

myself more as like the MTV News with Kurt Loder

Kurt Loder

Kurt Loder meets Joel Osteen that encouragement

meets Joel Osteen that encouragement

meets Joel Osteen that encouragement anyway Kevin is doing amazing work and

anyway Kevin is doing amazing work and

anyway Kevin is doing amazing work and it’s amazing to have him alongside

it’s amazing to have him alongside

it’s amazing to have him alongside beside me and and us doing this work

beside me and and us doing this work

beside me and and us doing this work together there are people that advocate

together there are people that advocate

together there are people that advocate for HIV that are HIV negative it’s like

for HIV that are HIV negative it’s like

for HIV that are HIV negative it’s like wow yeah there are HIV activists that

wow yeah there are HIV activists that

wow yeah there are HIV activists that are negative and Damon Jacobs is one of

are negative and Damon Jacobs is one of

are negative and Damon Jacobs is one of them Damon is a licensed marriage

them Damon is a licensed marriage

them Damon is a licensed marriage counselor in New York but when there was

counselor in New York but when there was

counselor in New York but when there was a pill that came to market in 2012

a pill that came to market in 2012

a pill that came to market in 2012 called pre-exposure prophylaxis or prep

called pre-exposure prophylaxis or prep

called pre-exposure prophylaxis or prep that he he started a Facebook group that

that he he started a Facebook group that

that he he started a Facebook group that now has over 11,000 members and these

now has over 11,000 members and these

now has over 11,000 members and these are people that are all just trying to

are people that are all just trying to

are people that are all just trying to stay HIV negative and so if you take a

stay HIV negative and so if you take a

stay HIV negative and so if you take a pill once a day you can do that so what

pill once a day you can do that so what

pill once a day you can do that so what about other health conditions well in

about other health conditions well in

about other health conditions well in heart disease Kathy Elton Elton and

heart disease Kathy Elton Elton and

heart disease Kathy Elton Elton and these are some of my favorite bloggers

these are some of my favorite bloggers

these are some of my favorite bloggers so what would Kathy eat is one soory

so what would Kathy eat is one soory

so what would Kathy eat is one soory Rich’s with diabetes rambling she

Rich’s with diabetes rambling she

Rich’s with diabetes rambling she advocates for obviously diabetes Natasha

advocates for obviously diabetes Natasha

advocates for obviously diabetes Natasha Tracy the bipolar burple blog so she

Tracy the bipolar burple blog so she

Tracy the bipolar burple blog so she advocates for mental health with

advocates for mental health with

advocates for mental health with substance use disorders Adams led an

substance use disorders Adams led an

substance use disorders Adams led an addiction ella Dawson is amazing she’s a

addiction ella Dawson is amazing she’s a

addiction ella Dawson is amazing she’s a herpes icon I like that word icon but

herpes icon I like that word icon but

herpes icon I like that word icon but she’s somebody that actually changed my

she’s somebody that actually changed my

she’s somebody that actually changed my view of other sexually transmitted

view of other sexually transmitted

view of other sexually transmitted infections and living with those and she

infections and living with those and she

infections and living with those and she gave a TEDx talk once and it actually is

gave a TEDx talk once and it actually is

gave a TEDx talk once and it actually is the one that made me decide gosh I

the one that made me decide gosh I

the one that made me decide gosh I really wish I could do something like

really wish I could do something like

really wish I could do something like that

that

that the last person is Lisa dayss and she

the last person is Lisa dayss and she

the last person is Lisa dayss and she has multiple sclerosis she started a

has multiple sclerosis she started a

has multiple sclerosis she started a blog MS lisa says and she advocates for

blog MS lisa says and she advocates for

blog MS lisa says and she advocates for those that are living with MS and she’s

those that are living with MS and she’s

those that are living with MS and she’s somebody that is really close to me

somebody that is really close to me

somebody that is really close to me she’s my mom

she’s my mom

she’s my mom last year she reached the top of a rock

last year she reached the top of a rock

last year she reached the top of a rock climbing wall the back story from that

climbing wall the back story from that

climbing wall the back story from that is 15 years ago my mom was on her death

is 15 years ago my mom was on her death

is 15 years ago my mom was on her death couch okay death couch because she

couch okay death couch because she

couch okay death couch because she couldn’t even make it to the death bed

couldn’t even make it to the death bed

couldn’t even make it to the death bed so she started blogging with MS Lisa

so she started blogging with MS Lisa

so she started blogging with MS Lisa says after I told her a year after I had

says after I told her a year after I had

says after I told her a year after I had started mom you’ve got to do this and

started mom you’ve got to do this and

started mom you’ve got to do this and although I can’t say that blogging and

although I can’t say that blogging and

although I can’t say that blogging and social media or the reason why last

social media or the reason why last

social media or the reason why last December that she reached the top of the

December that she reached the top of the

December that she reached the top of the climbing wall I can tell you that it’s

climbing wall I can tell you that it’s

climbing wall I can tell you that it’s highly coincidental and there’s

highly coincidental and there’s

highly coincidental and there’s something powerful about opening your

something powerful about opening your

something powerful about opening your lives and sharing your story for others

lives and sharing your story for others

lives and sharing your story for others and advocating for others to live well

and advocating for others to live well

and advocating for others to live well and that’s what she’s doing and I’m

and that’s what she’s doing and I’m

and that’s what she’s doing and I’m really proud of her

really proud of her

really proud of her there’s something that the all these

there’s something that the all these

there’s something that the all these bloggers have as well according to we go

bloggers have as well according to we go

bloggers have as well according to we go health there they have a blogger network

health there they have a blogger network

health there they have a blogger network of over 10,000 people advocating for

of over 10,000 people advocating for

of over 10,000 people advocating for health conditions and many of us have

health conditions and many of us have

health conditions and many of us have the H o n code which means that we have

the H o n code which means that we have

the H o n code which means that we have a third-party accreditation just like

a third-party accreditation just like

a third-party accreditation just like health line just like WebMD that our

health line just like WebMD that our

health line just like WebMD that our content is accurate so it’s now to you I

content is accurate so it’s now to you I

content is accurate so it’s now to you I live by saying that we’re all dealing

live by saying that we’re all dealing

live by saying that we’re all dealing with something okay there’s no one that

with something okay there’s no one that

with something okay there’s no one that I know yet in life that has sex or

I know yet in life that has sex or

I know yet in life that has sex or intercourse bitch that couldn’t or

intercourse bitch that couldn’t or

intercourse bitch that couldn’t or shouldn’t be in the same shoes that I’m

shouldn’t be in the same shoes that I’m

shouldn’t be in the same shoes that I’m in that’s a powerful statement but it

in that’s a powerful statement but it

in that’s a powerful statement but it all comes from we’re all dealing with

all comes from we’re all dealing with

all comes from we’re all dealing with something so if you are have a chronic

something so if you are have a chronic

something so if you are have a chronic condition

condition

condition how awesome an incredible would it be if

how awesome an incredible would it be if

how awesome an incredible would it be if you started to tell your story on social

you started to tell your story on social

you started to tell your story on social media what if the experience you had

media what if the experience you had

media what if the experience you had could save 15 people’s lives and that’s

could save 15 people’s lives and that’s

could save 15 people’s lives and that’s what I am encouraging all of you to do I

what I am encouraging all of you to do I

what I am encouraging all of you to do I share this with my mom I share this with

share this with my mom I share this with

share this with my mom I share this with my mom I love you so I’m giving that to

my mom I love you so I’m giving that to

my mom I love you so I’m giving that to you guys

you guys

you guys I’m Josh Robbins I advocate for her or

I’m Josh Robbins I advocate for her or

I’m Josh Robbins I advocate for her or people living with HIV to live extremely

people living with HIV to live extremely

people living with HIV to live extremely well and you can check out my story at

well and you can check out my story at

well and you can check out my story at I’m so Josh

”

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