16. How many of my previous sexual partners do I need to tell about my diagnosis?
This is kind of a murky area, with debate between activists and public policy experts. You will be asked to notify, or have the health department notify, anyone you have had sex with or shared needles with since your last negative HIV test or, if you’ve never had one, the most recent sex partners (say, in the last year). Your partner(s) will need to be tested now and, if the test is negative, again in three months (the window period between infection and when it actually shows up on a test). According to the New York Department of Health, how far back in time known partners should be reported is determined on a case-by-case basis depending on such factors as the approximate dates when you believe you were exposed and became infected and how willing (or able) you are to dig up those names and contact info, with the priority on current and recent partners. The federal Ryan White Care Act requires states to make a good-faith effort at notifying current spouses and anyone who has been the HIV-positive person’s spouse within the last 10 years. Therefore, spouses within the last 10 years, if known, should be notified, unless you’ve had a negative HIV test result since then. Do know that public health departments and clinics are not supposed to pressure you for this information and they cannot withhold your test results or penalize you in any way for not divulging this info.
17. How much do I need to tell my dentist and other health care workers offering me nonsurgical treatment?
All health care professionals use “universal precautions” to prevent the transmission of blood-borne diseases like HIV and hep C to and from patients, according to Robert J. Frascino, MD, of the Robert James Frascino AIDS Foundation. An expert for TheBody.com, Frascino says he’d recommend disclosing your status to your dentist, though, so that he or she could be on the lookout for HIV-specific problems in the mouth. “Health care professionals, including dentists, are trained to look for certain conditions more closely if they know you have an underlying medical problem, be that diabetes, cancer, HIV or whatever,” he writes. “Why would you not advise your dentist of your HIV status? If you feel that dentist would discriminate against you for being HIV-positive, that’s not the office you want to be treated in anyway, right? Being HIV-positive is not something to be ashamed of. It’s a viral illness.” The same is true for other health care providers: You don’t have to tell them, but it’s in your best interest and best health to do so.
18. What will change for me in my everyday life now that I’m positive?
With proper treatment, being HIV-positive is a manageable, chronic condition like lupus, diabetes, or asthma. But it’s a chronic condition nonetheless. Unless you had other health conditions prior to diagnosis, you’ll likely see a physician more than you did before because it’s vital that you monitor your health closely. Regular visits with your HIV health care provider will keep you up to date on everything concerning your health. Speak with your doctor about changes that need to be made to your diet, exercise regimen, and use of alcohol, prescription medicines, and recreational drugs. If drugs were a factor in your transmission (there’s a link between crystal meth use and HIV transmission, for example), your doctor might recommend rehab. You may tire more easily, be more prone to infections, have medical side effects you didn’t have before. But hands down, the biggest change in your daily routine will be taking medication, if you and your doctor decide this is the best treatment option for you. HIV medication requires strict adherence to the prescribed daily dosage, and the drugs often have side effects. Open communication with your doctor will ensure that you are fully equipped to handle the changes in your life.
19. Will being HIV-positive affect my ability to have gender confirmation surgery, plastic surgery, or gastric bypass surgery? What about hormone treatments?
Short answer: No. There was thought to be heightened risk from surgery, but a study published in 2006 in The Journal of the American Medical Association compared surgery data for both HIV-positive and HIV-negative patients and found that the two groups had the same level of complications from surgery. Moreover, medical workers are better educated about HIV than they once were, and the fear of positive patients has eroded. But you may still have to work harder to find a surgeon who has worked with HIV-positive patients, or if you’re transgender, a doctor who can work with both your HIV specialist and your reassignment surgeon.
20. Do I need a special doctor for my HIV-related issues?
Yes. It is important to find a health care provider who specializes in HIV medical service right away. Sometimes your HIV testing center will recommend someone, or you can also ask your primary health care provider. Finding an HIV specialist who fits your needs is a huge first step after being diagnosed as positive. That person will literally be your lifesaver.
21. In between doctor visits, are there symptoms I should be on the lookout for?
Regular appointments with your HIV specialist are absolutely necessary. It is also necessary that you monitor your body on your own. There are certain signs and symptoms to look out for and a few health factors that should be constantly monitored. According to Rose Farnan, RN, and Maithe Enriquez, RN, authors of What Nurses Know…HIV/AIDS, you should pay special attention to certain symptoms: diarrhea, weight loss or loss of appetite, trouble or pain when swallowing, white patches or sores in or around your mouth, long-lasting fever, a new cough, shortness of breath, headaches, dizziness, blurred vision, or difficulty remembering things. It can be hard to distinguish whether these symptoms are just passing or a more serious issue, but keeping track of your body’s patterns will greatly benefit your health. Farnan and Enriquez suggest keeping written records of weight and other factors that can change over time. Also, do know that medications affect each person differently. While side effects are rarely severe, if you have any side effect longer than a few weeks, don’t just assume you have to just put up with it; ask your doctor about it.
22. How do I prevent myself from getting sick?
Because your immune system’s strength will fluctuate, it is even more important to always keep clean. It sounds basic, but it’s a big help if you simply wash your hands and encourage others around you to do the same, especially before and after you eat, after using the toilet, and if someone around you is sick. Maintain healthy eating habits (there are HIV specialist nutritionists, and your doctor can refer you to them if needed) and start or keep up a regular exercise routine as well (even if it’s just walking 30 minutes a day). Smoking, drinking, and recreational drug use all compromise your immune system, so find ways to cut back on (or ideally, stop) these activities. Don’t forget to keep tabs on your emotions, because mental health is as crucial as physical health. HIV is a chronic condition that comes with a lot of baggage because of cultural stigma. You’ll feel it, and it’ll take a while to get used to it. An HIV-friendly therapist can help you build resiliency at this difficult time. You’ll need a strong support system that can include your doctor, friends, and family, plus new friends you meet in your support groups along the way. But do not hesitate to reach out, because a positive outlook will be one of your greatest allies.
23. What if I can’t afford my meds?
Thanks to health care reform, you can now get your own health insurance and if you can't afford it, the federal government has subsidies for those who make less than 400 percent of the federal poverty level (under $46,000 annually). If you already have health insurance, and the co-pays are too high for you, you can reach out to your state’s department of public health and contact the drug manufacture to get help cover the costs. If you still can’t afford health insurance, you may qualify for Medicaid. The AIDS Drug Assistance Program (ADAP) can also help uninsured or underinsured people pay for their HIV medications (learn more about the ADAP program here).
24. If for some reason I’m bleeding, do I need to worry about people who are helping me?
This probably depends on the situation, but often the answer is no. HIV is rarely transmitted in a household between family members (outside of sex and IV drug use, of course). And, if, for example, you got hurt playing football or duking it out at the gym, it’s “highly unlikely that HIV transmission could occur in this manner,” according to the University of Rochester Medical Center. “The external contact with blood that might occur in a sports injury is very different from direct entry of blood into the bloodstream which occurs from sharing needles or works.” The same goes for blood on a Band-Aid or a nosebleed or a cut finger, says Lisa B. Hightow-Weidman, MD, MPH, an associate professor of medicine in the Department of Infectious Diseases, University of North Carolina-Chapel Hill, and an expert for TheBody.com. “There is no risk of getting HIV from blood that has been sitting outside of a human body. Even if the [person bleeding] was infected, HIV begins to die once it leaves the body and becomes unable to infect anyone else.”
One caveat: If you’ve been in a serious auto or other accident, the emergency medical techs who are helping you should be using universal precautions, but it’s always good for your own health to tell them you’re HIV-positive (it’s illegal for health workers to refuse you care based on your status, per the federal Americans With Disabilities Act).
25. Do I have to tell my boss I have HIV, and can I be fired if my boss finds out I have HIV?
You absolutely do not need to tell your boss you have HIV. And you can’t legally be fired unless you have limitations on what you can do and your employer has made every effort to accommodate them. The Americans With Disabilities Act requires employers to make “reasonable accommodation” to the known physical or mental limitations of employees with disabilities (including HIV infection/illness). That doesn’t mean all employers understand the ADA; violations happen all the time, but if you do get fired, you have legal recourse. And certainly, if you have no symptoms that require you to have accommodations, then you can’t be let go because of your status. And under federal nondiscrimination laws your boss or prospective employer cannot require you to take an HIV test either.
26. What if I’m in the military?
First, you should know you are not alone. According to UNAIDS, HIV rates are higher among members of the military compared with the general population. The Department of Defense military demographics suggest 210,000 enlisted men and women are HIV positive. While testing positive for HIV disqualifies someone from being accepted into the U.S. military, those who are already in the military may be able to continue serving. You will be evaluated to determine if your are still fit for duty. Those fit for duty can continue to serve but must “conduct themselves in such a way as to not infect others.” Because it's the military, you should also know “How to Stay Out of Jail If You're HIV-Positive and in the Military."
27. How do I find support centers or support groups near me?
Each state has its own toll-free HIV and AIDS hotline, and Project Inform has the full list at ProjectInform.org/hotlines. If you call Project Inform’s HIV Health InfoLine, which is (800) 822-7422, you can talk to nonjudgmental people (in English and Spanish) who will listen to you, share their experiences, offer you accurate information about HIV, and help you navigate health care obstacles and talk to doctors about your concerns.