Episode 17 – Social Work among HIV Positive Individuals with Jess Edison

Episode 17 – Social Work among HIV Positive Individuals with Jess Edison

In this episode, Dr. Jones talks to UKCOSW student Jess Edison about Social Work Among HIV Positive People.

Bio from Jess Edison:

Jess Edison holds a Bachelor of Arts in Psychology and a Bachelor of Arts in Social Work, both from the University of Kentucky. Jess is a member of Phi Alpha, Psi Chi, and Phi Beta Kappa and graduated Summa Cum Laude with both bachelor’s degrees. Jess is privileged to serve HIV-positive and LGBTQ+ individuals in the Bluegrass, and is delighted to work with folks that make her heart sing. Educator, tireless learner, and activist are all labels that apply, and Jess is guilty of being particularly fond of flannel, boots, peaches, and homemade blueberry crumble cold brew.


Bluegrass Care Clinic, Lexington, KY

Ryan White HIV AIDs program

HIV/AID Hotlines and other resources

Additional Credits:

Middle Music by Broke For Free “a Beautiful Life” used under creative commons licensing

Transcripts are created using a combination of speech recognition software and human transcription and may contain errors. Please check the full audio podcast in context before quoting in print.


Dr. Jones: [00:00:02] Hello and welcome to the social work Conversations podcast produced by the University of Kentucky College of Social Work. My name is Blake Jones. Here we explore the intersection of social work research practice and education. Our goal is to showcase the amazing people associated with our college and to give our listeners practical tools that they can use to change the world.

Dr. Jones: [00:00:27] I’m joined today by Jess Edison. Jess is a bachelor student in our college of social work and also doing a dual degree in psychology is that right. Yes that’s correct. So good to have you with us today. You are the first student bachelor student that we’ve interviewed on this podcast so thanks for taking the time. I know you have a lot going on.

Jess: [00:00:47] Absolutely. Glad to be here.

Dr. Jones: [00:00:49] So I always like to ask people about their journey to social work. You shared with me that you’ve done some work in HIV prevention and those kinds of things over the years. And we’ll get into that. But what drew you to social work specifically?

Jess: [00:01:06] Well social work became an interest of mine. My partner is also a social worker and she talked a little bit about it but I was in psychology and I was noticing that they had an important part the individual but they were missing a key component. They would go – their attitude is very much “environment is a factor. Yeah, yeah – somebody else can deal with that.” And it felt very much to me like you’re missing half of the puzzle if you’re not doing what you can to address and acknowledge environment as well. And so I took some introductory social work courses saw where that matched up and dovetailed the two together.

Dr. Jones: [00:01:45] And did you have some background in activism or advocacy before you came to our program?

Jess: [00:01:51] I did. I did. I’ve been involved in the HIV and AIDS activism and LGBT rights since the late 80s early 90s. And that was during the AIDS pandemic I was growing up in Miami and watching the way that HIV positive individuals were treated the way LGBT individuals were treated. And that was a problem for me. So I was doing it on a grassroots level on a street activist level and transitioning over to social work. I still have that street activist perspective but I also want to work within the system as well and social work affords me the opportunity to do that.

Dr. Jones: [00:02:34] Sounds like you had the heart of a social worker before you came to officially study social work.

Jess: [00:02:39] Yeah yeah.

Dr. Jones: [00:02:42] So tell me a little bit about your work with HIV. I shared with you before we started that you know more than 20 years ago. One of my first jobs was at the HIV hotline in Durham, North Carolina. And I remember it almost felt like we were on the front lines then and we were just overwhelmed with calls. There was so much misinformation about HIV. Has that changed? Are things better or different? And how?

Jess: [00:03:15] It has changed to a point. The stigma is still very much there. There is still very much that clean versus dirty perspective you’re dirty if you have STI or HIV. So that’s something that I work really hard to counter.

Jess: [00:03:28] To change the language around that to erase some of the myths I was actually asked this weekend how do you get HIV like what bodily fluids does it come from. Can’t you get it from tears. Can you get it from saliva. So there still is that misinformation. Not to the hysteria of I can’t use a public restroom like it was in the 80s and 90s but there is still a lot of misinformation out there. One of the things that stands out to me is when I see some of my older patients people that have been HIV positive since the late 80s early 90s there’s still this hesitation and somewhat surprised them when I reach out to shake their hand bare handed with no glove because they’re used to people crossing the street to avoid them. And that sticks. So there is still that surprise there still is the stigma of this is someone that’s dirty. This is someone that has probably been doing something quote unquote bad to get this disease. So I work on an individual level and a street level to educate and change opinions. But I also within social work I am currently placed in the Bluegrass Care Clinic as a social work student which is the University of Kentucky’s HIV clinic where a caught up pharmacy and we receive Ryan White funding to provide HIV services to Kentucky. I was also involved in the inaugural group for the HIV interprofessional education program. That’s a certification program that allows for advanced training and specifically serving HIV positive individuals and was for graduate students only. But I owe Dr. Banner a big appreciation for that she referred me to them and said here’s the information just go to the lunch go to the lunch & learn. So I went. Liked it applied and between her and Dr. Weeks and some of the folks in the College of Social Work they were able to go “She’s not your traditional undergraduate student. Let her in.” And they did. So that’s how I got my foot in the HIV clinic down there.

Dr. Jones: [00:05:55] You got to watch those lunch and learns they get you every time – give you a free lunch, Now you’re doing the program.

Jess: [00:06:02]

Dr. Jones: [00:06:02] You know I think this idea of interprofessional education is so important and really I hope the wave of the future because of the issue like HIV is so multifaceted right. I mean there are so many different kinds of professions working on that. What role do you see social work playing in interprofessional education in general?

Jess: [00:06:29] Well once you go through the master’s level and you’re licensed you can practice independently as a clinician. So my site has an LCSW position for clinicians to provide therapy. We have a slew of medical case managers that are all social workers and then we have a nonmedical case manager who I’m working with currently to provide emergency financial assistance to our patients who may be losing utilities or at risk for losing their housing. We play a huge role in that setting.

Dr. Jones: [00:07:10] And are you finding that you are well respected by other professionals in that role?

Jess: [00:07:15] Yes I’ve heard in some other locations that maybe that’s not necessarily the case but I’ve not run into that at the clinic at all. There is very much this team mentality and it may be the population that we serve because we’re dealing with very high risk people who fall out of care if they fall out of care we have one outcome 100 percent of the time. So there is a larger incentive to work together and respect each other’s role. But to me the interprofessional program and the integrated behavioral health is very much a spoke system and to the person in the middle is the expert on whatever it is that we’re talking about if it’s medications it’s the pharmacy if it’s mental health it’s the therapist or the social worker. If we’re talking about medical then it’s the doctor and there’s very much this smooth transition into and out of that center spot when it comes to patient care.

Dr. Jones: [00:08:09] I know that you are doing not just a – I misspoke when I was talking to you earlier – it’s not a double – well it’s a double degree. It is actually doing a social work. You have a bachelors in social work and in psychology.

Jess: [00:08:23] That’s correct.

Dr. Jones: [00:08:24] Right. So you’re going to be well-trained. To be a licenced clinical social worker and probably pretty tired too by the end of all.

Jess: [00:08:30]

Dr. Jones: [00:08:30] Once you get your masters but you’re on your way right. What do you want to do clinically. What’s your passion?

Jess: [00:08:37] Well my passion actually includes additional education. I would like to add BCB to that which is board certified behavior analyst and integrate behavior analysis into my clinical practice to increase medication adherence and compliance within our patients and to create a program to encourage them and incentivize them to come into the clinic to stay in care. A lot of our patients though HIV is a can be a pretty devastating diagnosis. It’s the least of their challenges. So we want to do what we can to help them manage that because if they can manage their HIV they’re better able to manage their other situations that are going on in their life.

Dr. Jones: [00:09:24] So do you see yourself working with HIV throughout your career? Is that a real focus for you?

Jess: [00:09:34] It is.

Dr. Jones: [00:09:34] Why are you so passionate about this area?

Jess: [00:09:37] I’m passionate about it because I grew up in Miami during the height of the AIDS pandemic. I saw how HIV positive individuals were treated. I saw how LGBT individuals were treated and it hit me in a very visceral way people were treated like pariahs. And I didn’t know it at the time but I know it now that LGBT is also my wheelhouse. And at the time the two of them were lumped together so I didn’t understand it when I was 10 11 12 13. But the people that were dying and people that were being treated this way were my people. So that impact was pretty profound and it just it was one of the most egregious things about discrimination that I’ve that I’ve ever seen. It was it was absolutely blatant. It was OK to do it and it was in some places encouraged to be discriminatory and to be hateful and that’s just not that’s not right.

Music: [00:10:54]


Dr. Jones: [00:10:54] Yeah. What have you learned about yourself through going through our program or how have you changed in your thinking or just as as a person?

Jess: [00:11:12] I’ve learned that sometimes what can seem hateful or disrespectful or any other slew of negative things like that sometimes can just be misinformation and to go in asking as to pose to go and guns blazing and ready to tell somebody you know about themselves to go and asking and that has been something that’s been a very interesting shift because in street activism you go in ready to fight.

Dr. Jones: [00:11:50] Right.

Jess: [00:11:52] And so being able to take that step back and hear where they’re coming from and maybe find out what the difference is. It has been a profound shift.

Dr. Jones: [00:12:02] That’s so interesting I think in the in the climate that we’re in now there’s not much civil discourse going on around anything but especially around things that tend to polarize people right race and sexuality in politics and you know it’s a very angry, loud culture that we live in. Right.

Jess: [00:12:25] Mm-hum.

Dr. Jones: [00:12:25] So is that kind of what you’re saying is to really to listen to each other?

Jess: [00:12:30] I think there’s a place for listening. Absolutely but I also think that there is a time to go and guns a blazing. There is a time to be ready to fight and to take a stand there. I can agree to disagree with a lot of people but I cannot agree to disagree with someone who believes that I am lesser or that my patients are lesser or that someone is lesser because of the color of their skin or the way they move through the world. I can’t abide that and I can’t sit idly by for that. So there’s a time and a place for both.

Dr. Jones: [00:13:06] yeah. That’s good. Back to HIV. What does a patient in general need. Who is HIV positive in terms of…can you talk about some of their specific needs in terms of social work. What are you seeing?

Jess: [00:13:26] A lot of our patients are in poverty and an HIV diagnosis is a very expensive thing to maintain. You’re talking drug regimens of twenty to thirty-eight thousand dollars a year just to treat the HIV and not to treat any additional co-infections that they may have or any other life or health issues that they may have. So finances is a a big big part of an HIV diagnosis. Mental health is a big part of it as well. We’re talking about individuals who may or may not have a mental health diagnosis that they need help managing. We’re talking about dealing with the life altering diagnosis that is HIV. It’s no longer a death sentence. We can manage it. It’s a chronic illness now which is mind blowing to me even though that happened in 1992. It’s still astonishing to me. So we’re dealing with issues that we haven’t really dealt with before we’re dealing with long term HIV positive individuals who are dying of old age which is fantastic because their disease is not killing them. But it brings a whole host of situations to go along with that. Because some of the older drugs that we were on have higher toxicity levels and they’re hepatically processed so kidney and liver are not happy with them anymore. So it changes the way that you move through the world. So being able to provide the emotional support for that being able to network with community organizations to provide physical support for that. If someone goes into the hospital and they have an AIDS diagnosis a CD4 count of 11 and you know a viral load of over half a million they’re sick. They’re very very sick and they’re probably not going to be able to work for a minimum a year if they’re very very lucky. Quite often longer than that and quite a few folks we’re looking at permanent partial or full disability. So it’s being able to make the connections to where they can still live a quality life independently or as independently as possible.

Dr. Jones: [00:15:47] You mentioned that people are living longer with HIV. Think about somebody like Magic Johnson. You know he said I don’t know how old he is but he’s lived for a very long time with HIV. Do you think this has led to any kind of complacency in terms of people who are at risk for are at higher risk for exposure. Has there been sort of a complacent attitude set in because people are living so long?

Jess: [00:16:15] I think there’s a there’s always been a component of that. But the fear that the level of hysteria that it was in the early days of the pandemic is not necessarily there anymore but I think there is there is and always to a point has been this mindset of “it won’t happen to me. It won’t happen to me.” And I do think that that’s a little bit more prevalent now because in the 80s we’re seeing well maybe it will happen to me. You can buy into that when you know two or three of your lovers has passed away or family members that you’re close to are HIV positive and they’ve passed away. They’re not passing away from HIV much anymore because it is a manageable chronic illness. So I think there with the removal of that gut wrenching fear. Yeah I think there is to a point but I think it’s always been there on some level.

Dr. Jones: [00:17:14] Yeah. So I wonder if you could talk about the special needs of someone with HIV in terms of social workers. We have a lot of students that listen this podcast. Faculty members and general public. But what is it… You know if someone is working in a therapy practice and someone comes to them who is HIV positive are struggling with that in their life what are maybe the top two or three things that they should be aware of?

Jess: [00:17:45] OK. I would say the number one thing to be aware of as a clinician working with someone that has disclosed a positive HIV status. Don’t force disclosure. You can encourage disclosure. You can have role play sessions where they go through it you can offer for them to come into your office to help with disclosure but don’t force disclosure. It’s a very personal decision that we have to really work to keep our moral judgments out of it. Because there may be safety reasons that they’re not disclosing. So that’s absolutely the patient right to do that. And I think the other the other thing is they don’t need the pity. They don’t need or want your pity. HIV positive individuals tend to be incredibly resilient incredibly strong individuals. They need support they need someone to walk beside them not to pity them.

Music: [00:19:00] .

Dr. Jones: [00:19:00] I haven’t asked this question in a few podcasts but I want to ask you because I’m just really interested in how you respond. So. Say you’re at a conference somewhere and somebody like Bill Gates comes up and hands you a blank check and says, “You know I want you to go back to Kentucky and do some good work with my money.” You know it’s a blank check. You can spend however much you want. What would you do would you dream about with that kind of money.

Jess: [00:19:28] Oh man I would love to have… the dream job story. This is what we’re asking is the dream story. My dream job story is to open a clinic with myself and several individuals that focus on LGBT and HIV to provide mental health services to individuals living with HIV and their families. Then family here is a very broad term. In queer culture we use family not just for biological family but for partners for very close friends to provide services to those individuals as well because HIV doesn’t just affect the person that’s with the diagnosis. And I think that Ryan White does an outstanding job of covering services for that individual. But society at large doesn’t know how to support the family they don’t know how to support the loved ones. And I think that’s a key piece because we know you can maintain undetectable viral loads and very very healthy independently. But it is much much much more likely if your family is on board and able to be supportive. And I think providing an outlet for that family to talk about their concerns to ask the questions would be valuable for that.

Dr. Jones: [00:20:57] Yeah that’s good. I like that. Well I want to wind up with the question about self care because you are you’re one of the first people that I’ve run into that is actually doing a double degree. I know that’s a ton of work. You’re getting ready to immediately start your graduate program. Sounds like maybe you want a Ph.D. at some point along the line.

Jess: [00:21:20] Ha-ha…That’s what I keep getting told.

Dr. Jones: [00:21:21] So this leads me to worry about you a little bit, Jess, in terms of your self care what do you do to maintain balance in your life and take care of yourself?

Jess: [00:21:31] I schedule it like I schedule everything else. There is one weekend a month that is off the books. It is entirely me getting socialization. Me spending time with friends and family and getting out and socializing with the friends that I don’t get to see the other three weekends. And you know throughout the week because I am very very busy. And another part of self care is don’t be afraid to ask for help. My partner works. She comes home and she cooks me dinner every night you know or we go out for dinner. She does these things to take care of me and my friends are supportive and understanding. And another thing that I’ve learned is that self care isn’t always bubble baths and reading a nice book. Self care for me the most effective is usually doing the hard stuff the stuff I don’t want to do that task that’s been on my task list for three weeks that I really need to get done now. Eat the frog, so to speak. Do the thing that you don’t want to do. Do it first. And it’s done and the rest of the day gets a little better. Because I did that hard thing and isn’t that wonderful that – self care is is doing the hard stuff not the bubble baths.

Dr. Jones: [00:22:56] That’s good. I struggle with that myself kind of putting things off that I that I don’t want to do and saving this for the end. But you’re suggesting that just tackling them and get things out of the way so that you can move into something that you enjoy. Yes it worked for you.

Jess: [00:23:10] It has. Yeah.

Dr. Jones: [00:23:12] Well I’ll probably run into you in the graduate program so I’ll ask you this question again I ask all of my students this. I think this is so important. You know how how can we be effective allies with our clients and patients if we’re burned out and you know exhausted. And so I appreciate what you’re saying. Well just I want to thank you for coming on. It’s been great. I always learn so much you know when I talk with people so thank you for your work. And you know the college is really proud of you. I’m sure you’ve had some other people tell you that. But I’m proud of students like you who really challenge themselves and really use their passion to to further social work. So thanks.

Jess: [00:23:56] Thanks, Blake, thanks for having me.

Dr. Jones: [00:23:58] You’ve been listening to the social work conversations podcast. Thanks for joining us. And now let’s move this conversation into action.

announcer: [00:24:07] This production is made possible by the support of the University of Kentucky College of Social Work, interim dean Ann Vail and all the faculty and staff who support researching contemporary social problems and prepare students for the social work profession hosted by Dr. Blake Jones produced by Jason Johnston thanks to our Webmaster Jonathan Hagee. Music by Billy McLaughlin. To find out more about the UK College of Social Work and this podcast visit https://socialwork.uky.edu/podcast