Kali Lindsey, Vice President for Federal Government Affairs at the National Association for People with AIDS (NAPWA), shares his ideas for a 2009 Gay Men's Health Agenda.
I cannot even begin to express how much sleep I have lost concerned with the experiences that gay and bisexual men endure living with HIV/AIDS. It’s hard to believe that it still needs to be said in 2008 that there is life after an HIV/AIDS diagnosis. The result means we as gay men living with HIV/AIDS must make critical decisions to support our access to healthy emotional, physical, and sexual lives.I can’t recall not even one person telling me it was a festive occasion the day they found out they have HIV/AIDS, so for the all intents and purposes we can all agree that this day for most is a horrible day. Thanks to advances in treatment and some small superficial breaks in the perpetual silence, many of us are now able to live with the result. All of us had a different reaction when we learned about our diagnosis. Whatever our reaction may be, those of us around today have learned how to manage our health and our lives with our diagnosis in mind.
WHO WILL LOOK OUT FOR OUR HEALTH?
Once we find a way to move past our initial reaction to our diagnosis -- whether it is hurt, fear, anger, despair, confusion, numbness, or surprise -- we must then figure out who else needs to be involved in our decisions going forward. Immediately, we are faced with starting a new relationship with a healthcare professional who will likely be going through this with us for the long haul. Pursuant to better health, this perfect stranger can only best do their jobs with access to our most personal truths and our complete trust with our most precious possession – our lives. For gay and bisexual men, it can be very challenging though necessary to find a healthcare professional that has HIV/AIDS experience. To be truly comfortable and frank with our health care professional, it is important to seek out a physician who not only has HIV experience, but is also gay or very comfortable speaking to us about our unique LGBT issues. (One who is able and willing to assist us in holding on to our individual dignity by providing quality healthcare services, helping us manage our treatment, and empowering us to make decisions about our physical and sexual health without sexuality-based prejudice or misinformation.) Don’t underestimate the value of being comfortable with your health care provider on every level!
OUR HEALTH DEPENDS ON THE DECISIONS WE MAKE
Equipped with current and useful information from our healthcare providers, along with other trusted sources which include our friends, communities, and of course the internet, we must begin to make other necessary decisions about our lives with HIV/AIDS. Our diagnosis doesn’t just affect us, it affects our partners, our families, our friends, and our jobs. HIV can be transmitted through sexual contact and sharing syringes, from this point on we have to consider the moral and legal consequences of the most intimate and natural behaviors of our human experience. The choices we make will affect our physical and emotional lives, as well as the lives of those around us. Does anyone still wonder why people with HIV/AIDS seem so stressed?
TO TELL OR NOT TO TELL; THAT IS THE QUESTION
How and when do you disclose to your current or future partner(s) that you have HIV? Disclosure is a touchy topic that requires some individual interpretation, but let me be clear that it is my belief that it is always better to give people choices. Disclosure isn’t about sharing your business; it is about making the best decisions for your health and the health of the ones you love!
Now it is time for my Public Service Announcement: Disclosure doesn’t spread HIV! The information we are sharing is an invitation for open and honest dialogue with our partners to make essential decisions about how we are going to live together. When we disclose our positive sero-status and we are rejected on the basis of our status alone, this sends a very hurtful and disempowering message to many of us that HIV/AIDS is BAD and challenges how we perceive our value. This rejection has nothing to do with you! The rejection is the result of insufficient education or discomfort on the part of the person doing the rejecting. Unfortunately too many of us, evidenced by our ever-increasing rates of HIV, are not making informed decisions about our intimate sexual lives. It’s amazing how many of us forget that the same condom we use to protect us when we assume our partner is HIV-negative or aren’t sure of our partners’ HIV status, is the same condom that will protect us if our partner has HIV/AIDS. Don’t internalize this or allow it to degrade your emotional health. Shake it off! We are the “Commander-in-Chief” in our own lives, and we have to make decisions that are in our best interests. We have enough to contend with without adding in other possible co-infections, that is, if we aren’t dealing with others already.
PERSONAL FITNESS
For many gay and bisexual men, the gym and other avenues for personal fitness offer social networking opportunities. For those of us living with HIV/AIDS, engaging in these activities will positively affect our bodies’ ability to cope with the disease. These venues also offer a place for physical and mental rejuvenation. The “mental weight” of living with a stigmatized disease can be so taxing that we often experience increased limitations in our physical and emotional capacity. Physical exertion allows our bodies the space and freedom to do some much needed work on our minds. Also, remember that many studies show that individuals who work out regularly develop better self esteem and feel better about themselves! Personal fitness is not just about physical health; it can also lead to improvements in mental health and well-being!
TALK TO SOMEONE
Structured conversation is an often underutilized and far too difficult to access benefit that provides clear opportunities for improved health outcomes -- mental health services. Therapy or counseling too often receives a bad reputation because of its frequent stigmatization and linkage with “craziness” or “mental deficiencies”. However, many people find that their experiences with mental health professionals provide a different perspective on how they view their lives and give them an outlet to get things off of their chest. The experience of trained mental health therapists and clinicians can open doors for greater success with our physical and mental health, treatment, and other aspects of our lives.
TREATMENT WORKS
Now you know, and knowing is half of the battle! With that being said, I return to my earlier sentiment about the importance of your relationship with your healthcare provider. We need to have some very real and candid conversations about how to maintain our lives given the diverse contextual realities of each of our individual lives. Trust me, I understand how difficult it is to deal with the side effects and burden of our daily, lifelong treatment regimen, but I submit to you that the benefits far outweigh the challenges. Our community needs you, so do everything that you can to stay with us.
TAKE AN ACTIVE ROLE IN YOUR HEALTHCARE
This includes the full gambit of your clinical health from making your appointments with your healthcare provider and checking to make sure we are keeping the virus in its place and allowing our immune system to thrive. This of course can only happen if we adhere to our treatment regiments. That’s right, everyday, on time! Our doctors are not telling us to stop smoking without reason. In case you are thinking it is just the party line that healthcare providers have to say, similar to “just lose weight”, allow me to restate it out of love. It is in each of our best interests as gay and bisexual men living with HIV/AIDS to quit smoking immediately! If we are smokers, we need to forget that cigarettes ever existed. Every six months make sure you are seeing your dentist for a check-up. They will be excited to see that you are not smoking, flossing regularly for healthy gums and teeth, and protecting your oral health. Excellent oral health provides a strong defense to possible infections. In addition to good nutrition, healthy teeth and gums will increase our ability to tolerate and adhere to our oral treatment.
DO YOUR RESEARCH
Lastly and this is very important, stay up-to-date on information about HIV/AIDS. Improvements are being made everyday and many of them might provide additional possibilities that will improve your physical and emotional health. We are living with HIV/AIDS, and we make choices based on the best information we have available. This is how we can pursue opportunities for individual dignity and good health.
You are not alone; NAPWA is here for you. If you are ever feeling like you need help, we are only a phone call or an email away!
[Click here to read previous input into the 2009 Gay Men's Health Agenda. Please feel free to comment there - or you could send in a full post of your own here. We will be happy to publish it! The feedback we receive will be featured in the closing plenary of the upcoming National Gay Men's Health Summit and will be a means of moving the community forward in the new year around issues that are important to all of us.]
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