This video comes from Australia. It's one of the scariest things I've ever seen.
AB: I think it's especially hard because of our age - well, also there's a lot of pressure to pair off.
RC: Yeah. I think these are problems everyone is having, but they're being exasperated. I was having a really hard time getting insurance, too. Stuff like that is really difficult. You kind of feel like a zombie.
AB: What would an insurance agent say to you?
RC: They just deny you. I'm a freelancer, you know. That's just kind of how it is. I could have gotten all this major risk medical insurance, but the whole insurance thing to me is just full blown lies. Why have insurance if you can't guarantee that you need it?
AB: Are your parents excited that you're coming home?
RC: Yeah, they are - they're definitely the role models of supportive parents. That's the other thing, too: the shame continues into that. I feel terrible for my parents - I feel like it's an embarrassing thing to have happen. It's not the stuff that my parents are going to be proud of… It's not going on the Christmas card. They have to deal with so much stuff now: they have to deal with me. I think this year I've realized that it's more than just having it. You have to deal with it. Doctors visits are so expensive. The medicine and everything are so expensive. You're never entirely free to do whatever. You have to play by the rules a little bit. Even though it's unfair and the insurance doesn't make any sense, you have to play along and do whatever they say.
AB: You are taking medicine now?
RC: No, I'm not, but I probably will soon, I guess. That just seems to me like a scary next step that I really don't want to take.
AB: Well, I really would prefer if you did.
RC: I mean, yeah. I think that - it's not really a choice that I have.
AB: When I last saw you said you were feeling a lot better, but now that I talk to you you don't seem that jubilant.
RC: I am. I think I've definitely been worse. I just think that - I'm kind of frustrated lately about - but it's good because it's an empowering thing - before I think I was like, "Woe is me," and letting what people said about me get to me, but now I'm not letting what people say make me more angry. If you're not intelligent enough to understand or try to understand, then I just don't have time for you.
AB: Right. And that's how it should be with anything.
RC: Yeah, exactly, but it took me a while to - I think it also has forced me to deal with issues I've had my own life. If I'm going to get over all of this, I have to face the demons in my closet. One of those is giving weight to random strangers and what I think society thinks about me. That can be the biggest demon to face: the created one.
AB: Yes.
RC: You know Jack Mackenroth from Project Runway? I really like him. It was great to have him on the show. It's really nice to have people like Jack who put themselves out there. I definitely feel like I would never want to put myself out there. I feel like I couldn't right now, at least. It takes a lot of guts to do that.
AB: Well, there are definitely scales to doing that. I think that just talking to me is doing that. Jack did it on a much larger scale, obviously, but just being open about it and saying, "If you're not down with it, fuck you!"
RC: Definitely. It just takes a while to learn those skills. I can see that down the road. I think that it's weird because I'm pairing it with this mid-twenties thing, too. I feel like if I were thirty and this happened, I would be much more equipped to handle it. Things were really dark for me for a while. I thought about suicide as fully as one can think about it. I really looked at everything on the table. You realize once you have nothing to lose, things couldn't get any worse, so things might as well just better.
AB: But in the end you must realize that the pros of your life definitely outweigh the cons.`
RC: Yeah, but I think that when you realize that you don't have a choice, it's worth it just to hang it out.
AB: Yeah, man. We want you to hang out!
RC: It's almost like playing a video game. You have one man left and you know you're not going to beat it, but just go in there and fight.
This is the hard part, the getting used to living with HIV. It is not easy, but the operative word is living. You are not dying from HIV, you are living with it.
I was diagnosed in 1986, so it has been part of me for half of my life. I am still not comfortable with it, but it no longer haunts me. I take my meds religiously (the only thing I do "religiously") and take it day by day and week by week. I don't know if I'll be hit by a bus tomorrow or die in my bed at 90, taking HIV with me. I want to hold my head high and have fun every step of the way.
That is what I finally got used to. The "dying" part doesn't matter. It's the living that matters. I hope you find a way to live and thrive and make peace with not only HIV but every part of you.
I found out in 2002 that I was positive also and I understand many of Ryan's comments. Big difference is I work for a company that has decent insurance for all employees and I take my meds every day. I just keep reminding myself that many people take daily medicines for a variety of things and I am no different. My ex spent the last year (and possibly the last 2-3 years) we were together cheating on me, and I didn't find out until too late. Would I do it all again? Sure, I loved him competely and I know that at one point he felt the same for me. I think I would lose so much of what makes me a good person now if I hadn't gone through this entire experience with him.
I am in no position to tell my mom, though; it would devestate her, especially since she lives in a small town in KY and the fact that my dad just passed away a couple of years ago from an aneurism that went to his heart and shut everything down in minutes and my younger sister was just diagnosed with Grave's disease. She also has no real way to educate herself about HIV/AIDS and only knows what she sees on TV or hears at church.
I agree that it is very hard being single and positive. I live in Phoenix and it is still a struggle in who do I tell and when do I tell them and how. There is no manual on the HIV positive life and because everyone's life and story is so different, there probably can never be one that addresses all the issues we face on a daily basis.
Good luck Ryan, and be glad that you have a safe and caring home to go to in your time of need. Many of us do not have that.
I certainly don't know much about being infected and how to deal with it. It was scary to hear the many concerns Ryan shared in this interview. I want to mention how important it is to have a good support network. I was glad when I asked my primary care physician to be tested he said that if it were to come back positive, he would be there to deal with it from the medical side. At least I felt that I would get the attention needed in such a situation.
When reading the interview, I was also reminded that each one of us has needs. I mean emotional needs that are as important as the needs of others. In some sense, being selfish is as crucial as thinking about others. I wish you all the best in figuring out what it is that you need.
The health insurance thing is an issue that is unacceptable for such a developed society in which we live. As I have grown older, having decent coverage has become more and more important when starting a new job.
Good luck with your move and your future.
While I can't pretend to know anything about being HIV positive, things are very different than they were 15-20 years ago. That said, this interview clearly brought up a few points illustrating how we, as a society, need to move forward on HIV/AIDS issues until we not only properly deal with prevention, but also with caring for people who have it. No one should feel as though they're alone or tainted because of HIV - and we shouldn't put obstacles, such as HMOs, in the way of getting necessary care.
I hope we'll find a cure for it soon. Not only will it save lives, but it will save people the anguish they so often seem to go through when they get it.