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.
Small daily pleasures can help balance the other parts in which you have to manage uncomfortable symptoms or emotions.
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.
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10:45 AM: HUNTINGTON BEACH, CALIFORNIA Alexander Smith: “Morning yoga on a stand up paddle board. I find balance, strength, and flexibility in the bridge pose. And practice the same principles in life, as I pose with HIV/AIDS.”
6:45 PM: CLARKSVILLE, TENNESSEE Chicagoans Andrew Espinosa (living with HIV since 1997) and his wonderful nephews, Beni and Christopher, who keep him going. Just having fun at a family wedding.
6:30 PM: FORT MYERS, FLORIDA Ann Johnson: “A Day with HIV was spent enjoying my husband’s company while we fished in a new spot. I was lucky enough to have pulled up the biggest fish and for once, the most. For me, it is not thinking about my HIV on a day to day basis, but enjoying the life I have today.”
3:52 PM: TEXAS David Cisneros: “I found out I was positive three months ago. It’s kinda funny that I found out about this campaign on my first happy day in a long time. It’s been a good day.”
1:30 PM: EL MATADOR BEACH, CALIFORNIA Our wedding announcement photo. Greg Louganis, 53, and Johnny Chaillot-Louganis, 52.
11:26 AM: SAN DIEGO, CALIFORNIA John Keasler: “Saturday morning is a time for 30–40 of us HIV-poz guys to gather at a local coffee house and socialize. This is probably our fourth coffee house in 13 years; we outgrew the previous ones.”
3:00 PM: ISLAS MARIETAS, OFF THE COAST OF MEXICO Josh Steinmetz: “My first dive.”
12:00 PM: FORT SMITH, ARKANSAS Kari Farmer Coffman: “Here’s a fun shot of me and my daughter! We LOVE spending time together!”
9:30 AM: HOBE SOUND, FLORIDA Marissa Baker and family: “Today we decided that we were no longer hiding. No stigma, just love. Brothers and sisters. Another beautiful Saturday morning enjoying one another. There’s nothing better than family.”
2:00 PM: ATLANTA, GEORGIA Mark S. King: “As a gay man living with HIV, I was honored to share a message of joy (and humor) as a Grand Marshal of the Atlanta Pride Parade. Being open about my status is a privilege and the best weapon I know to combat HIV stigma.”
6:00 PM: MINNEAPOLIS, MINNESOTA Marvin Innes: “This picture was taken with my friends Antony and Gwen along with my dog Cedar. They have all played a role in my coming to terms with my HIV/AIDS.”
1:15 PM: VALLEY STREAM, NEW YORK Nancy Duncan: HIV-positive since 1985: “I spend my days educating, advocating and mentoring for the cause. I’ll continue this mission until I go to be with God -- or better yet, until there is a cure! I am grateful for my family, my friends, my son and my amazing, supportive partner. I have HIV, it doesn’t have me, and when it’s all done I will know I’ve made a difference!”
11:35 AM: CHARLOTTESVILLE, VIRGINIA Melissa Baker: “Raymond with our daughter Aliyah. Picking apples has been a family tradition. Picking them together on A Day with HIV is our new tradition.”
6:45 PM: SANTA MONICA, CALIFORNIA Robin Barkins: “This picture was taken at Dream Halloween Keep a Child Alive, for children who have been affected by HIV. It has been a true honor to have this little guy be there to support me on this journey living with HIV.”
2:00 PM: CHICAGO, ILLINOIS Sean Blay: “This is the happiest I have been in a long time! My new puppy Hershey and I are enjoying each other’s company. I call this photo, ‘Hershey Kisses.’”
12:45 PM: NORTHBEND, OHIO Theresa Kenney: “I am a mother, daughter, sister and grandmother putting a face to HIV in hopes of bringing awareness and changing stigma for those of us living with HIV. Testing can save your life.”
Follow Allison Webel on Twitter: www.twitter.com/allisonwebelPhD