The Color Between The Lines with Esther Dillard

Turning Stigma into Strength: Janel Kitchen’s HIV Advocacy Journey

• Esther Dillard • Season 2 • Episode 13

Share episode

In this moving episode of The Color Between the Lines, host Esther Dillard speaks with HIV/AIDS activist Janel Kitchen about her personal journey after being diagnosed in 2005. Janel shares how she faced stigma—even from medical professionals who doubted her story—and how she transformed her pain into a mission to uplift others.

As the founder of Positively U, Janel works tirelessly to provide medical care, food, clothing, and emotional support to individuals living with HIV/AIDS. Her powerful story is a reminder that no one should face illness alone or in shame—and that community can heal what stigma tries to destroy.

Listen in and be inspired by her courage, resilience, and dedication to changing lives.

👉 Don’t miss future episodes that spotlight stories of resilience, advocacy, and empowerment. Subscribe to The Color Between the Lines wherever you get your podcasts.

🔔 Subscribe to the podcast for more enlightening talks and join us in exploring how historical narratives shape our future. You can also watch it on YouTube at https://www.youtube.com/@thecolorbetweenthelines/featured

On this edition of the Color between the Lines. We speak with HIV AIDS activist Janet Kitchen about her incredible journey. She was diagnosed with HIV in 2005, and since then she's been on a mission to help women of color, whether they're married or not, to know their status and advocating for people living with hiv. I'm Esther Dillard chatting with writers, authors and experts who offer an added perspective for listeners. This is the color between the lines. This week on the Color between the Lines, I had the pleasure of speaking with a woman who has been through a lot in her life. She was a wife and a mom who had no idea in 2005 why she was dealing with a medical crisis. My understanding is that you were not one, that you were kind of a mom's daughter next door. Yeah. Can you. Can you talk a little bit about your life and how you received this diagnosis, so. I moved to Florida and just got finished battling breast cancer. I was diagnosed in 1998, and everything was going well, but I started to feel very weak and mimic the symptoms, mimic what I had with breast cancer. So I'm like, oh, God, this is back. The weakness, unable to eat, severe diarrhea. All the textbook things that I learned later. So finally I had to go to the hospital. And when I was there in the hospital trying to find out what's wrong, I think what alarmed me is that they did take an HIV test because of, you know, the white blood cells were so bad. So they called the oncologist in, and only to find out, they said, let's take an HIV test. They brought infectious disease doctor on board to find out that my test was negative. So I was not getting any better. And when the doctors said, if you're a praying woman, I need you to pray because I have no idea what's wrong with you. So as soon as I bad as I got, all of a sudden I bounced back and I got better, which was really good, but I was still experiencing the symptoms. And then finally, my regular doctor, he was not there for my regular physical. My primary doctor and his wife is also that works in the same practice. She said, well, Janet, let's take an HIV test. Because I said, I've lost 20 pounds within a couple of weeks, like six weeks. So I said, okay. And she said, because she knows. She's like, no, I feel bad. I don't. I said, no, let's do it. She said, no. I said, little, let's take the damn test. You know, let's find out. And when she took it, it came back positive. And so her husband then was back my doctor and said, you know, he sat me down, but he did prepare some of my really good friends to come to. He didn't tell him what it was, but he said, jan is going to meet you. The test was positive. Just moving fast forward. And so I knew about hiv, knew a little about aids, but not knowing what categories were more vulnerable or anything like that, because we have that myth that it has to be someone that is, what they say, promiscuous, that has a lot of savory. Behavior patterns. You know, this whole thing about behavior. So when I found out, I. My husband, I had just separated, and I told him my test was positive. And he said, well, I don't know about you, but I feel okay. There's nothing wrong with me. So I said to the doctor, so of course, the health department came, and the health department told me his was negative. And I'm like, negative. So my doctor said, it's not true. We have to get this tested. So after I finally went with him to the health department, and the test was positive. So it was really. Really was a shock. So what I did then is that, of course, had to read more, then had to find care. I am a retired. I'm retired from the government. I was a postal worker. So I got my medication. I went to the pharmacy to fill it, only to find. My portion was like 900amonth. This is back in 2005. There's another. 900amonth. So I called the doctor up, I said, you know, because they were my friends, I'm like, I can't afford 900amonth. And her outcome was really. Her response was really not very compassionate. She said, well, you may have to just work at McDonald's, Janet, so you can make the extra money. I hope my notifications are going up. So. So I said, I'm weak. So that started my advocacy. That's the beginning. That's why I tell you that story. So then. I went to the health department to go get some help to help me with medication, because that's what I was told that their job is to do, to find out they don't help anyone that has insurance. So he said, if you didn't have insurance, I'd be glad to help you. But since you have insurance, I can't help you. Because back then, they had not established the ruling that it was a supplement for private insurance or for insurance. So I had to figure out a way to get money. So I found out there was a group that meets, you know, the Ryan White Care Act. It's a whole, and they're in all different areas. So after the meeting, I said. I stood up and it was like any question. I said, I need help. I need to get medicine. And nobody could help me. Am I just supposed to die? After the meeting, everyone came to me. They did whatever they could to help me. Part two of the journey, that wasn't really receptive. The questions that was asked of me then that was 47 was, okay, I need to have the name of all your sexual partners, which is a common thing for any communable disease, any sexual transmitted infection. So I felt okay. So I gave them my husband's name. And she said, okay, and who else? And I said, I don't know what you mean. And she said, come on, like, really? So that was the beginning of the insult to me not knowing this whole stigma. That was the word that I'm going to learn then that. That's how it started. So it may go into other things, but I'll let you ask. When, when you, when you started to tell them that you had only your husband did, how long did it take before people just started to believe what you had to say? They kind of did not believe it because at that point I realized that a lot of my other peers had different backgrounds. And it was like, okay, well, she said this. But I think other demeaning part is that when they assign me to was a case manager or whoever, person, patient care, court. Coordinator. Maybe not that wording said the same thing. It was a constant. What is your name? What is your sexual partners? How many? How did you contract this? It was a constant question to Finally, I pushed the paper back and I said, I'm not answering these anymore. I'm just not answering. Did you not get that same information from the person that referred me? Why do you think I'm here? Why do you have my doctor's why? As if, like, your answer is going to change. If we ask long enough, the answer will change. So, yeah, it took a long time. So this has made a huge, huge impact on your life. You had to go through a lot to get to getting the help. What I guess led to finally where people started to listen and give you the help that you needed. So I kept going to the health department. I kept going back and forth, and then there was. I guess a legislation had passed that said that they would now help monetary. And they realized really that it would be better to add a supplement to someone with insurance, as opposed to trying to pay for the whole entire insurance. And then I ran into another wall because I was able to work. I was told that I made, I think, $12 too much. Over the amount, and they couldn't pay for my medication. So the gentleman that was in front of me was a retired federal employee. Employee as well. I think he was in the military. And I said to him, I'm not going to leave this room until you figure out, okay, how you have to extrapolate the numbers until you figure out, I'm going to get the meds because I'm not going to die because I had the nerve to go to work. You're not going to do that. Well, then get 12 extra dollars. And he did say, if you stop working, we'll be able to take care of it. And I said, I' worked all my life. That's not going to happen. So when I said to him, when the probably one of the biggest side of my advocacy, I said, I'm going to sit right here until I said, you're a smart man. I'm going to sit here until you figure out how you can extrapolate this $12 for me to get my medication. And he said, I kept sitting there. And he says, janet, I'm going to call the security. I said, well, that'll be nice, and I'll meet them, too. But I'm not moving until you figure out a way. If we're talking about $12 in my life, I'm going to sit here. And we had a standoff maybe about 15 minutes. And he kept typing. He kept saying, janet. And I kept saying, george. And we went back and forth. And finally he said, I found a way, and that's how I got my medication. I know that from what I understand, you had some big challenges in the early stages of your diagnosis, especially living in rural. A rural area like Davenport, Florida. Can you talk about a little bit of those? And what. How did you overcome those? I think. Know that a lot of people think that's my story. I can tell you it didn't really bother me. Davenport back then was really, it's a real in the beginning was hardly anyone here. So of course there were no services. My diagnosis started in Tampa so I went back there. So the, the, I guess the comp, one of the issues may have been complications was that it was rural but I had a car, had the ability to drive. We do not have any buses or anything. However, the, the health department that did provide service was really far. It was far. And then I realized what does one do that don't have transportation? How do they get there? I found out later on that a lot of people

left early in the morning, like maybe 5:

00 in the morning, had to change several buses just to get to like a 9 or 10 o'clock appointment. And I'm. Like, this is crazy. I don't understand this. This is crazy. The challenges here, not necessarily Davenport, but this county is a large county. Polk County, Florida, is huge. They compare it to the size of Connecticut, the county itself. And getting from one end to the other is very difficult for medical care. Just so I have it correct, you were diagnosed at what age? 47. 47. And you had been married for how long? Three years. Three years. So it's interesting, you started like a lot of people get married really young. You married not so young, and then you had this major crisis, what along the way. I know that of course the diagnosis is probably one of the main things that inspired you to establish this organization called Positively you. But what else inspired you to do this? And what is your mission now in terms of where you you are today? Okay, so this was my second marriage. Wasn't my first. I got married young. I have a son who works with me in Positively. You one of the biggest champions. But what inspired me, really, it was the. The. The constant walls hitting walls hitting walls. And then the. I guess. I guess the audacity to think that a person living with HIV could not advocate for themselves, at no point deserve the utmost customer service. Just from the door, the complacent. It was not having very nice clean places. Things like that was like. And I have a really good friend that was with me in the beginning, and I said to him, and he recited it back about a month ago, that I said, God, if there's ever a way that I can get an organization, I'm going to show them how they can treat a person living with hiv. And that really started because the walls were just bumping into walls and just bumping into attitudes. One of the main thing is that I wanted to find a support group. I wanted to meet other women in particularly other black women living with HIV that had similar situations, similar backgrounds. And finally I found a support group. It took, I think it took about eight months for me to find a support group because my only support system then were gay white men who were very compassionate and very loving. And I finally found a support group where women, when I say lived, experience the same thing that contracted HIV from their husband who thought they were in a monogamous relationship and was not. So it made me feel better, like I wasn't crazy. Yeah. Yeah. The common denominator. What would you say with the women that you have met at positively you as far as their situation? Was it a husband that was on the down low or was it someone that was just more or less having multiple partners outside what was happening with most of the women that you've come in contact with? And. And how are you, how do you. How do you support each other when you do meet? Okay, so being very fair on. On words, because words are important. The word down low is really a derogatory word. One would believe that that is good. And I know it's a word that people put around. So men that have sex with men and women are called bisexual. Now, rather they tell you is the difference where that word down low came from. But it's just that they're bisexual. So for my bisexual brothers, I have to stand up for them. Now, many may say and don't say, just like men that have multiple partners don't tell you they have multiple partners. I really definitely cannot say if my husband was bisexual, but it had to be multiple partners. You know, I don't what I've learned that you can't actually really be kind. Confident of anyone but yourself. You don't know where anyone is there. And I'm not saying that to anyone that may think that their partner is not monogamous. You just don't know. You really don't know. So I forgot the other part. Question. How do you support each other? This. This organization? What. What do you say is the secret sauce? That. That. That is different, perhaps with this organization than others. Other support organizations. Okay, so my. The organization was a support group that I met. My organization is not a support group. We are located now in two locations in the state of Florida. We did have three I provide support services. I have a medical clinic. I have doctors that work for Positively Used. So we're not a support. Support is a good factor of what we do, but we provide social service along with HIV care and treatment. And we also. I also have pharmacists that work for us as well. Give me. Because so then people understand what Positively You. Its mission is. Can you kind of put that in a nugget as to what is the mission of Positively you? So I can recite it in a small. Because it's kind of long. And it's really to provide culturally and appropriate and compassionate programming and service to people living with hiv. And the preventive services. So that covers everyone, not only those living with, but those that we are trying to prevent the contraction of hiv. My main word of all of this is culturally inappropriate and the last is compassionate. I live by those words. Can you give me some examples of what, as far as your definition of culturally appropriate, that applies to a situation so that people can understand why it's so important to your organization? In the climate that we're in now, we don't turn any one way. Just added the whole DEI intentionally added to my website. Intentionally. So if someone comes there regardless, documented, undocumented, black, white drug user or not, sex worker or not, culturally, there is no way that we would turn you away. And we lgbt, we just don't have a. I'm sorry, you don't fit our criteria because you. We just don't have that. You've been involved in a lot of advocacy efforts, including serving on state and national boards. Can you discuss some of the key initiatives that have been part of your, your, of your work and the outcomes of these organizations, these boards? Yeah. So one of my biggest, I was contracted by an organization, another. AIDS service organization. We were trying to make an impact and bring more awareness about hiv. So I was commissioned or consulted to spread the word around the state of Florida. And you know, Florida is a huge state. I was able to go from the top of the state, from Jacksonville all the way to Miami and across and just zigzag across and meet other community people, including those living with hiv, to go to what was then one of the largest hiv, I guess, advocacy event. And that was the March on Washington. Then that's when President Obama was there. It was at that point the United States was forbidden to be part of the March on Washington, the whole International Conference on aids. Because at that point in we United States did not allow individuals living with HIV in the country. So we were banned it. And President Obama lifted that. Wanted you to reflect a little bit on your journey from diagnosis to becoming a mental health counselor and now an HIV advocate. What personal growth have you seen in yourself and seen changes in yourself over the years? So from the poor person, I felt bad and went probably through the whole stages, probably of death, you know. Trying to understand the overwhelmingness, the shame. Having to explain this to my son and to family members. From that point, getting them involved in educating them on HIV to then now having my organization. I had it started in my garage in 2005. I was able to open up a little small place in Tampa, then was able to grow into a 3,000 square foot, and then I opened another one in Winter Haven. So it's a lot of growth with it. The challenges was then I decided I had to go back to school. I had to have some sort of credentialing. That whole, we don't really expect you unless we see some credentialing or something. So alphabets behind your name. What are your aspirations, I guess, for positively you in the future and goals in the years ahead? So, given the climate now, one of the things that I know we have to do is we have to have multiple streams of income and services. And so I'm challenged, and this is one of my goals that I gave myself. Challenge on how I can bring other fundings in without only depending on. Grants and government funding. So I've said this in the beginning and Tuesday was a shock for everyone to really think of those gears. So one of them is to try to find other ways to bring in more funding so that we can stretch larger and wider. I do want to open another office, but I do want to open it in the most rural area where they're not getting this kind of help that they really need. Wow. Are there any ways that people can get in who want to get involved with positively you? How are they, how are you hoping that they would contribute and how do they get in touch with you? Oh, okay. So I'm@positivityu.org we own all of the positivityu.org info, all of that. So just remember positivity the letter U, not Y or U. And we are in Tampa and we're also in Winter Haven. One of the things that we really need, I would say to you volunteers to come help. And we are now in the climate again that we're in. We're in the need of having food because we feed every morning. Unhoused individuals come to our office to get food. And we do need gently used clothes because we have a clothing closet that we let individuals come get closed. So at WW positivity you.org would be great. And you can always Google my name. You'll find it wondered, you know, for someone who's a woman who may be faced with something similar to what you've gone through, and they're at the beginning of their journey, what would you say to them? There's hope. There are a lot of avenues for them to reach out more than before. There are organizations that would advise them just to look up, organizations like Positively you. And there are a lot of organizations that could help them, but before, it was very, very limited. And just make sure that you're getting the treatment and feel welcome when you walk in. From the time that. You're there at the door. That's the beginning. That's the face of the organization when you walk in the door. And if not, you know, don't feel dismayed. You know, keep trying. Yeah. You are a very strong person. I can't imagine all that you've gone through. You've probably gone through a lot of ups and downs and everything, and. And I really appreciate you even sharing with. With, you know, with the audience and with me, because a lot of people just wouldn't want to talk about this. They want to just kind of stay to themselves and stay alone. Yeah. And you're right. And I realized that because that was one. I said it was only going to be between me, God and a doctor. No one would ever know. But my higher power just would not let that happen. It just wouldn't let it happen. So HIV is a household word. I will talk about HIV at the dinner table Thanksgiving because you never know who needs your help. If you're a person, that's standard. I can talk about hiv, the hair salon, and someone later on will come for help. So for those that don't have the same courage I do, just continue to listen to other people and they'll probably become an advocate. If not, come join my group. We'll help. That's it for this edition of the Color between the Lines. For more episodes go to the Color between the lines podcast on iHeartMedia. I'm Esther Dillard.