Many thanks to readers who have sent emails; I’m glad you enjoy this column. I want to start answering here some of the email I receive in case it helps others with similar questions:
Dear Ken,
I read Positive Outlook every month and I appreciate your discussions. I wondered if you could help me. Unlike so many in the U.S., I have good health insurance and a good social support system. However, ever since I found out I was positive about a year ago, I’ve been on a downward spiral. I haven’t been back to my doctor in many months, and I haven’t done anything to deal with HIV except have a confirmatory second test. I’m not in a good place because I find being diagnosed overwhelming. I just have one question: Where does someone start?
Nervous Newbie
Dear NN:
Let me start by saying that my response here can’t be seen as official professional advice; you will need to consult a physician and probably also a mental health professional on your own, but I do have some feedback for you. Take heart that being diagnosed with HIV today has a better overall outlook than in years past, but I certainly don’t recommend HIV; it’s a serious challenge and people need a lot of supportive resources – so those who are HIV-negative should take great pains to stay that way.
I’m not sure if your “downward spiral” is emotional or physical, but both need attention. Looking back on my nearly 13 years of living with HIV and doing generally well, I attribute that first to being lucky and then to being “smart” about getting myself into good care from the start. I found an HIV specialist physician, got laboratory blood tests at recommended intervals, and took prescribed medications. If I had side-effects, I worked assertively with the doctor, nurse, and pharmacist to troubleshoot them. I took myself to therapists, support groups, research projects, and treatment information seminars, and picked up magazines and newsletters.
I believe everyone diagnosed with HIV needs to design a customized personal coping plan – kind of like a “buffet” of medical and social services. I also believe in a little healthy denial, meaning that you go on having dreams and goals just like an HIV-negative person and you don’t let HIV stop you any more than its symptoms and care regimen demand. I began my training as a psychotherapist just before I was diagnosed, and I was much more invested in identifying myself as a “psychotherapist in training” than as an “HIV patient”. At the time, the good advice I got from my father was to “play the game one inning at a time”, and so far, we’re in 13 years of extra innings!
I think the first thing someone who is newly diagnosed can do is just to take a deep breath and know that there are medical, psychosocial, and spiritual resources to help you. Start with your doctor to monitor your viral load, CD4 or t-cells, and other health and immune system indicators available through blood tests. There is some chance you need some medications very badly now to prevent opportunistic infections that can be harmful or fatal, so early medical care is critically important. Take the doctor’s feedback one step at a time. Insist that he/she answer all your questions or refer you to a nurse, social worker, treatment advocate, nutritionist, or pharmacist who can.
Where do you live? Some cities have more AIDS service organizations than others; call your local United Way for information. Also, try an online site like www.thebody.com, since it has information from experts on medical, prevention, nutrition, and mental health aspects of HIV all in one site. There are other great sites, but I use that one the most. If you don’t have Internet access at home, try a local public library. I can tell that you have the ability to take good care of yourself; if you can operate a PC and send me an email, I know you’re a smart person who can do the things you need to do to manage HIV. I know some people who cannot read but manage their HIV well by getting the information they need verbally.
In addition to your medical team, identify your sources of support from family, friends, and community. Some people can’t help much with HIV directly, but they can help you focus on aspects of life beyond the disease. It’s OK to ask for their support. But for help beyond a friend’s “advice”, an HIV-knowledgeable therapist can help. I provide “online therapy” services as a staff therapist on www.MyTherapyNet.com, and this is great for people who live in small towns who can afford private therapy but can’t access HIV-knowledgeable therapy in person. However, it doesn’t fully take the place of the wonderful experience of seeing someone in an office one-on-one to explore your personal views. Therapy for people with HIV is often available for free or low cost through programs funded by the Ryan White CARE Act. I think the combination of good medical and psychosocial support will make a difference in reducing your feelings of overwhelm. Good luck and let me know how it goes!
