High profile disclosures of HIV status, like Charlie Sheen’s, remind us of just how far we’ve come in treating HIV in the past 30 years. HIV is now a chronic disease like diabetes, heart disease or emphysema. However, there are still questions–such as can people with HIV really live normal, healthy lives?
The good news is that there are more treatments available now for HIV than ever before and people living with treated HIV live almost as long as those without HIV. But people with HIV still face challenges when it comes to dealing with the lingering stigma of HIV and feeling that they are worthy of happiness and longevity.
They also have to deal with a more rigorous medication regimen than people with other chronic diseases. The goal is to achieve the things you want to do and to get pleasure from life, despite HIV infection.
For someone newly diagnosed with HIV it’s also important to remember a few key points.
· You do not deserve to be sick. All chronic diseases, including HIV, involve a combination of genetic, biological, environmental, and psychological factors. For example, stress alone does not cause most chronic illnesses. Mind matters, but mind cannot always triumph over matter. If you fail to recover, it is not because of lack of right mental attitude. There are many things you can control that will help you cope with chronic illness. Remember, you do not deserve to have HIV but you are responsible for taking action to manage your illness.
· Don’t do it alone. One of the side effects of chronic illness is a feeling of isolation. This is often a big issue with HIV when HIV stigma and discrimination are still pervasive. As supportive as friends and family members may be, they often cannot understand what you are experiencing. Chances are, however, that there are others who know firsthand what it is like to live with a chronic condition just like yours. Connecting with other people with similar conditions can reduce your sense of isolation, help you understand what to expect, offer practical tips on how to manage symptoms and feelings on a day-to-day basis, give you the opportunity to help others cope with their illness, help you appreciate your strengths, and inspire you to take a more active role in managing your illness. Support can come from reading a book, or a newsletter about the experiences of others. Or it can come from talking with others on the telephone, in support groups, or even linking online through computer and electronic support groups.
· You’re more than your disease. When you have HIV, it can be consume you. But you are more than your disease. And life is more than trips to the doctor, taking medications and managing symptoms. It is essential to cultivate areas of your life that you enjoy. Small daily pleasures can help balance the other parts in which you have to manage uncomfortable symptoms or emotions. Find ways to enjoy nature by growing a plant or watching a sunset, or indulge in the pleasure of human touch or a tasty meal, or celebrate companionship with family or friends. Finding ways to introduce moments of pleasure is vital to HIV self-management. Focus on your abilities and strengths rather than disabilities and problems. Helping others is one way to increase your own sense of what you can do instead of focusing on what you can’t. Celebrate small improvements. If chronic illness teaches us anything, it is to live each moment more fully. Within the true limits of whatever disease you have, there are ways to enhance your function, sense of control, and enjoyment of life.
· Illness can be an opportunity. Illness, even with its pain and disability, can enrich our lives. It can make us reevaluate what things are really important, shift priorities, and move in new directions. It can give us an opportunity to explore and grow in new and exciting way to become the person we’ve always wanted to become.
Health is soundness of both body and mind and a healthy life is one that seeks soundness. A healthy way to live with a chronic health problem is to overcome the physical mental and emotional problems caused by the condition. Learning skills for managing chronic illness allows you to successfully manage not only HIV and other health conditions—but even life—as well.
Dr. Allison Webel, co-author of “Living a Healthy Life with HIV” is an articulate and extremely credible speaker about the effects of stigma on HIV patients. She is a prominent researcher who focuses on the field of HIV self-management.