The main focus of this booklet is to let you know that you can live well with HIV. It may take some time for that message to sink in, because adjusting to this new life may be an emotional road on top of it being a physical one. But this information has been written to answer questions that many people have after testing positive. You're not alone, and with resources and effort you can live a healthful life with HIV.
In these pages, you'll find topics that will help you understand more about your diagnosis. We highlight three key areas: knowledge (what's useful to know), health (what can be helpful to do), and self-advocacy (how to get what you need). When these three areas work well together, you get better outcomes. Getting informed about HIV, being actively involved in your health, and talking things out with your doctor and support network can result in a longer, healthier life.
You don't have to figure all of this out at once. Read this booklet at your own pace and revisit it from time to time as you feel ready for more. We offer this information to help support, but not replace, the relationship with your doctor(s).
Living with HIV today is very different from what it was like in the 80s or 90s. You may have some real fears such as being open about your HIV status, starting medicines or the prospect of living with HIV. These fears are normal, but some of them may be influenced by outdated information or by stories of what it was like living with HIV in the early years.
Early in the epidemic, many people developed advanced disease well before they even knew they had HIV. They often found themselves going to an emergency room to be treated for illnesses like pneumonia. This is not the case for most people today.
HIV is now sometimes considered a chronic disease, like diabetes or heart disease. This means it's something to be aware of and treat every day of your life, once you start taking meds. You will need to see a health provider about every 3 to 6 months.
However, some aspects of HIV could make it more troublesome, such as not being able to be open about it to friends or family. Stigma, discrimination and even domestic violence are real concerns for many people. These social aspects can sometimes make it difficult for individuals to take care of themselves.
HIV is certainly not a walk in the park, but many more support systems exist today and much more is known about how to treat it. HIV meds have dramatically improved and extended the lives of people living with the virus, and today's drugs are generally safer, better tolerated and easier to take. Plus, there are other steps you can take to prolong your life, improve your health, and help prevent other conditions.
You've already done a lot by learning your status and beginning to adjust to living healthfully with HIV. Your diagnosis can be a wake-up call to be more proactive about your health, develop a healthier lifestyle, and take advantage of treatment options.
You likely have some time to consider the many aspects to this new development in your life. These include lining up various types of support, finding a doctor experienced in treating HIV, making decisions about treatment, and getting linked into local resources to help you maximize your well-being. Finding others who live with HIV, as well as case managers or social workers, can go a long way to support you in living well.
Chances are that you're already on your way. Hopefully you've contacted a local organization or talked with the person who gave this booklet to you. If you haven't, we suggest you find local resources and people who can give you referrals to services that suit you best. Project Inform can also help at 1-866-448-4636.