Joe's POZ Blog

Finding love while being HIV positive can be a daunting task. As if dating was not already as awkward as possible, when you add in HIV it just becomes a totally different game. As I read the posts and hear the laments in my HIV support group, concerning the lack of relationships, I often wonder, "When do we become our own worse enemy?" Granted, life with HIV is hard enough and finding a relationship can be a challenge for even the most adept Don Juan. Yet when I listen, I hear some very concrete reasons, on why people do not have relationships and many of them have little to do with a lack of opportunity for dating. Few involve the inability to overcome insurmountable issues, while others are directly controllable and some are simply based out of fear.

So in my own humble way, let me share some of the experience and knowledge I have gained through my dating career. I don't have any easy answers or magic potions, but I do believe that if you are honest with your self, develop reasonable expectations and can be adaptable that there is indeed someone out there for you. It may not be easy and the self-introspection, may be more than some people can handle, but anything really worth having takes work and aren't you worth it? I know I am.

Let's start with the most insurmountable dating obstacle, which is illustrated with this quote from a local man, frustrated with dating in the HIV environment. He says: "I understand your reasons for not wanting to date me because I have HIV. Now you need to understand, how being told that HIV is more important than anything else about me, makes me feel". In two depressingly honest statements he encapsulates one of the most impossible aspects of dating with HIV. For some people, for whatever reasons, dating someone with HIV will never be an option, because they are unable to distinguish between the person, the virus and their fear and nothing you say or do, will change that reality.

Some will claim that their fear is borne from a potential exposure to HIV, or they don't want to love someone and then watch them die, or many other reasons. While the reasons may matter to them, the rejection you feel is no less devastating. But as painful as that rejection may seem, you really need to understand that this issue is theirs and not yours. For someone to label another, based on a trait they have no control over, is a losing game. It's not logical but based in emotions and emotions are neither good nor bad, they just are. Unfortunately emotions rule many people

Another obstacle, though maybe not insurmountable, are those people who are simply unknowing of what they want in a relationship or are not yet mature enough to be in one. They have yet to realize what is really important in life and while you might lust after them, I would expect, in the end, you would find them sorely lacking as relationship material. You might have to grow a little tougher hide to not take these types of rejections so personally and you certainly need to get adept at excluding these types of people, to maximize your odds when dating.

Another area of dating that confuses me are those who search for their "soul-mate" or their "other-half". I never thought, before meeting Stephen, that I lacked half a soul or that I was not whole. I always thought that the goal of a relationship was to enrich your life, not to complete it. I have a great personal life and I enjoy many things that I do not share with anyone. I like myself and it took me many years to both realize and believe that and I have no intention of going back to those insecure times. I had learned to appreciate the difference between wanting something and needing it.

So maybe, when you think that you need someone else to complete you, might it not be better to look inside your self and determine what you really need? I often found it very easy to project my needs onto my relationship, where they usually collided. Personal and relationship issues can be very different and both can take a great amount of time and effort to address. I find that my relationship is most successful when I distinguish between the needs of the two and deal with each of them accordingly. It's my responsbility to work on my own issues and to have the energy to work at relationship issues. I suppose a simple way to say this would be to encourage you to pack lightly when seeking a relationship and take the absolute least amount of personal baggage with you.

I also believe that there is a connection between your own feelings of self-worth and how well you deal with the rigors of dating. It took me awhile to realize that some people really are only attracted to certain types and if I did not fit that preconceived type, then I was out of luck. The rejection would have nothing to do with me and after a time, I did find this type of rejection easier to handle. That's where your self-worth comes in, because you know what type of person you are, but they will never know what might have been. Again, this is their issue so don't make it yours.

I also doubt that love will come knocking on your door. Looking for love is hard work and you need to work at improving your odds. You know what you like and enjoy, so find venues that attract other people with those same interests. Learn to think outside of the box when searching for people. Don't discount avenues just because you are too fearful or because they might require some work. Or miss the obvious choices where possible dates might frequent daily, such as a local grocery store here, that is the number one place to meet gay men in this city. If you want it badly enough, you need to take some risks and put yourself out there for everyone to see, otherwise, how will they know that you exist?

I met Stephen on the Internet. To this day, we are unsure of how I found his profile, as I claimed it to be on a site, on which he claims he had never posted a profile. Very Twilight Zone, but I like to think that maybe I had finally become my own man and I was ready for this relationship. That maybe all my hard work had finally allowed me to attract the person I really wanted in my life. Stephen was not even my "type" when we first met. But he captivated me during our first dinner and I have never looked back. To think, that I might have excluded him, for the foolish reason of not being my "type". But instead, I left myself open to the possibilities and they have turned out to be endless.

There is also the issue of presenting yourself honestly in seeking to meet people, because facades eventually crumble. I assume you want someone to like you, for whom you are, not for who you think they might like you to be. So be honest and let them see the real you. You might also want to alter your thinking when first meeting someone and just look for friends first and see what develops. I discovered that by just making that first meeting, say for coffee, it took a lot of the pressure off both of us. And if that first meeting was less than what I had hoped for, I could cut my losses and bow out after coffee. Just because they might like you, does not matter if you don't feel any chemistry for them. Why drag out a painful experience? There is a vast difference between being mean and being honest. On the other hand, if the meeting goes well, you then have the perfect segue to another "date" or just moving right into another activity.

I also recognized the difference between "falling in like/love" and "falling in lust" because you need the first to fuel the second. I learned to listen more than I talked, otherwise how would I get to know the other person? (It also helps you from divulging too much, too soon.) I learned to not wear my heart on my sleeve and to share my experiences as a trickle and not a torrent. I realized the value of realistic expectations, when meeting others and strived to not project my issues or wants onto the other person. I also learned when to stay home, because although the physical body might be wanting, the heart and soul were tired that night. Trust me, when you are not feeling "right", that comes out to others.

As I dated, I began to see how closely tied my fears of being alone were to my being HIV positive. That somehow the virus would prevent any meaningful relationship from developing. So I worked very hard to maintain a positive outlook when dating, even when the rejections came in buckets. A funny thing about those rejections though, was they enabled me to understand the real me and helped me to formulate my wants and desires in a partner. Granted, I might not have been able to get a date, but at least I knew what I was looking for in a partner. I began to see how fear was a part, even a desirable part of dating, because it kept you sharp, while still leaving you vulnerable. It helped me to understand that when you are really ready to love is when you are must vulnerable, because you are exposing your heart to another. I truly believe that you are ready for love, when you allow your self to be loved by another.

Most important, by far, is that I finally saw how most of us are just as afraid as the next person and that we really do not need much out of life. All we hope for is finding that special someone to call our own, to share our life with and to be part of our relationship. But love takes many forms; so don't discount anything without really exploring the possibilities. I would also suggest that you learn to enjoy your travels through the world of dating. Because you never know if your journey will ever end and if it does not, you don't want to have regretted the journey. There are certainly worse things in life, than say, having too many friends.

Personally I think everyone can find love. Spend some time understanding what love means to you and what you want and need in your life. Devise a plan and then put that plan into action. Learn to pick your self back up, dust off your pride and press onwards. Understand which parts of dating you can control and then do so. Become adept at spotting those issues that you cannot control and don't let them get under your skin. Be realistic with your goals, learn that there is no shame in compromise and I expect you will be successful in your quest.

I know I was.

I'm not sure what has changed, but I cannot seem to retain an HIV doctor for over two years, no matter how hard I try. Ever since moving to Florida, six years ago, I have had no less than 4 HIV doctors and now I am in the process of reacquiring my previous HIV doctor as I just fired my current one. Before moving, I suppose I was spoiled in relation to health care. Since my diagnosis in 85 I had been going to the Henry Ford Hospital complex in Detroit. It was a huge hospital, with a clinic for everything and had been built by the fortunes of the Ford Motor Company family. It was state-of-the-art and the hospital staff was especially qualified and compassionate.

Whatever you needed was just a short walk away at one of the dozens of clinics or labs that occupied each building. Their infectious disease clinic was second to none and they had two doctors who had been pioneers in HIV research, treatment and clinical trials. When I first tested I had a female doctor who nurtured me though my first years and held my hand when I though I was going to die. Evelyn pushed me hard and had little patience for whining. This is not to say that she lacked compassion, but she was very skilled at using it as both a carrot and a stick, to ensure you had the best care possible. She was everything I needed at that time in my life and is one of primary reasons that I have survived for so long with HIV. She helped to lay a solid medical foundation for me, which I have continued to build upon. But then she got an offer, to head her own HIV clinic on the East Coast and after a tearful farewell, I became her associate's patient.

Norm was also a pioneer in HIV treatment and research and he put me through more trials than I ever even knew existed. He believed that we both had a duty to beat this disease and that I had to become one of the soldiers in the battle. To that end, he also challenged me to learn everything about HIV and together we managed every aspect of my health. We talked about my therapy and the options to consider before selecting one. I brought in articles for him to read or he would refer me to some work to gain an understanding about a new procedure or clinical trial. We really worked as a team and I felt equal ownership in my health care and trusted him implicitly with my health.

We also argued and often disagreed about many things, but our goal was always the same. Norm was an exceptional man. He was the kind of doctor who would discuss his patients weekend plans to keep them safe. He wanted you to tell him if you were going to do any drugs, so he could warn of any interactions with your meds or conditions. He freely discussed very intimate details in describing safer sex and would listen patiently and re-explain concepts until you understood. He was also very effective in getting you to agree with his position, but he did it through the sharing of information and persuasion, never through threats or intimidation.

So it broke my heart when he told me to move from Michigan. By 98 my health was in the dumpster and the frozen winters of Detroit were slowly killing me. During the winter I would become a prisoner in my own home and my only respite was an occasional trip to Arizona to see an old friend. So after my fourth bout with PCP I decided that he was right and started to plan my move. Unfortunately, due to my fathers failing mental health, I had to wait until my father was placed into an Alzheimer's unit in early 99, because by then, I knew I had waited, maybe too long.

Welcome to the Sunshine State of Florida, where I don't know a soul and I had just moved with my drug-addled abusive partner. But first things first, so I attended a support group and got the name of a respected HIV specialist and became his patient. Unfortunately I was soon to learn that health care in Florida was very different. This office was run like a well-oiled machine and that was the problem. It wasn't a machine but a health clinic for human beings. They pushed patients in one end and spit them back out just as quickly. My first visit was not with the doctor as I spoke with a physician's assistant. I never saw the doctor, Ralph until my 2nd visit and that was for five minutes tops. This doctor lasted for 4 months because his father died and he went home to run the family business, a wood mill, I believe. I was really floored, because I was just beginning to adjust to him and his staff and poof, he's out the door. But he did have this Adonis of a partner who then became my doctor.

Peter was wonderful, because he was bright, beautiful, gay and pos. I mean, what more could a gay man want in their HIV doctor? We really connected, because we were close in age and he understood my issues as a gay pos male. Unfortunately I was doing better in responding to my treatment that he was in responding to his. It was really hard to review my lab results, only to have him lament on his lack of progress. Like somehow it was unfair that I was improving, when he was still having drugs fail him. I never questioned his ability and we worked well together but test reviews were becoming somewhat troublesome. But before any of that could truly become an issue, he gets hit with a Medicare Reversal decision that demands he repay them $850,000 for overpayments from the past three years for administering IVIG. Suffice it to say, he lost the appeals and his only way out was through Bankruptcy, but not before he passed me onto his new associate, another hot looking HIV specialist, who also happens to be gay.

Moving onto doctor number three, in less that two years, seemed to be overkill. I was tiring of the search for a doctor, because I had no continuity of care hopping from one doctor to another. But I committed to working with Jim and over the next two years we began to develop a really good relationship. I thought I had found a permanent HIV doctor and settled in for the long haul. Unfortunately his partner had other ideas. It seems that there was bad blood developing between them and she eventually forced him out of the practice. And to add insult to injury, he had signed a non-competition agreement and could not practice medicine within 25 miles of her existing practice. I was beginning to wonder if anyone here had ever even heard of the concept of continuity of care.

So I then became the patient of Marah, as Jim had stopped practicing and I really had few options at that time. I was a little leery at first at being back with a female doctor and while our start was a little bumpy, we eventually fell into our groove. She was pretty good at giving me time to discuss issues, but she was under the added burden of caring for both her and Jim's patients. But I've been doctoring myself for two decades now, so I did not have a lot of needs and since my health remained fairly stable, we were both content to just monitor my health for the next year. That's why what happened two weeks ago, remains such a mystery to me.

Stephen has been seeing the same doctor as I was. He sometimes has issues with anxiety attacks and has used Lorazepam for years, to treat the problem and the doctor had no issues in prescribing this drug for him. Yet, when I saw her two weeks ago and requested the same drug for the same problem, I received a very different reaction. She went into this tirade about how she hated this particular drug; how it should be banned due to its addictive nature and how she was not going to prescribe it and that if I had problems with anxiety that I should see a therapist. All I could think was "No, she did not just say that".

I went onto explain that I have had more therapy than Carter ever had pills and I needed the drug for when my anxiety was just too great, which might be once or twice every month or so. It did not matter, I was not getting the drug and when I quizzed her on why Stephen got the same drug for the same problem, she refused to discuss the subject any further. I just sat there dumbfounded at what I had just heard. I thought she was allowing her prejudice to cloud her judgment and she was dismissing my needs because of that prejudice.

She had broken our partnership by making a unilateral decision without explaining her reasons or even taking my feelings into account. Granted she was my doctor, but she did not know my full history or apparently me. I felt like she was accusing me of abusing drugs, just because I asked for mild sedative. But no matter what her reasons, the damage had been done. She lost my trust and in doing so she has lost me as a patient. I deserve to be treat fairly and honestly and not to be told, "Because I said so". I did not survive the past 21 years by accepting such nonsense from my doctor and I have no intention of starting now.

So the cycle continues and I am returning to my previous HIV specialist Jim, as he has just joined another practice. Yes it will be a drive, but good care is hard to come by and I am excited about returning to him, because I have treatment issues that I want to address. I look forward to seeing him again as I really like him as a person, and I trust his ability as a doctor. I like the fact, that even in the money-driven health industry that he still takes the time to share information and I'm dying to know where he and his partner have been, since I last saw him. But I also know that his practice will change, just like the others have and as he churns through more patients, I will get less time with him at each visit. Even so, I just hope I can keep him longer than the last time.

The reason I shared this rather convoluted tale is that I am becoming increasingly concerned about the quality of HIV care in the US. Or more importantly, the impact of medical economics on how health care is administered. Florida has the 3rd largest HIV population in the US, but our HIV doctors are being run off. Malpractice insurance rates are triple what they were just 3 years ago and my doctor pays $150,000 a year for such insurance. How he is expected to pay this becomes exceedingly difficult, as reimbursement rates have steadily declined during the same period. So he needs to see more patients in less time. The factory concept expanded. And more patients in less time, equal less time with each patient, which comes at a time when HIV therapy is becoming even more complex.

It's become necessary for us, as patients, to monitor our health and treatment, even more closely than before. Not only do you need to keep up with the latest drugs and treatments, you also need to become very adept at navigating an increasingly confusing, complex maze of treatment options. This also concerns me, because while I might be adept at navigating this maze, what about those people who's health does not allow them to keep current on HIV news, or worse yet, lack the ability to access the care they so desperately need? Gone also, are the days when I could get "one-stop" health care and instead I must gallivant across my county to get this test here or that screening there. I have no less than 4 doctors and even have to use two pharmacies to get my meds. One for the drugs provided through Ryan White and the second for everything that Ryan White does not cover. It seems that accessing health care has become a gauntlet and few of the people, with the ability to alter the system, seem concerned enough to affect change.

If you need care for HIV in the new millennium, you better be up on your medical knowledge, as well as knowing how to work the system. That is why case mangers are so important to our care, because they can navigate the system with you. But cuts in funding for case management force many agencies to limit their caseloads and so more and more pos people are being left to fend for themselves. Surely you remember how together you were when you were first diagnosed, so how can they expect the newly diagnosed to even begin to identify, let alone navigate this gauntlet of health care? As if becoming positive is not traumatic enough, many are now thrown to the wolves to fend for their own care. Sadly, I don't see any end to this decreasing level of health care.

HIV budgets at both the state and federal levels have been level-funded for years. Although the number of infections continues to increase, the money is just not there for their treatment and so more and more patients are going without adequate care. And given this new reality, it becomes paramount that each of us become our own best advocate. Not only do you need to keep up on the latest treatments, you might also need to make some noise to get them.

Gone are the days of the community clinics, where you felt part of a family, had as much time with your doctor as you needed and even became close friends with the care givers. Medicine in the new Millennium, while breath taking in scope and ability has been reduced to almost commodity status. Just to survive, the clinics, doctors and hospitals are forced to process as many patients as possible, just to keep their doors open. The humanity of medicine seems to be draining away, because the hands of economics have gained a stranglehold on the medical profession and there seems to be little chance of that changing.