How To Live Well With HIV

For most people who have reliable access to modern treatment and health care, managing HIV is not just about survival; it’s about living well. But what does “living well” actually mean, and what specific steps can you take to maximize your health and happiness if you’re HIV positive?

Here, in brief, are 10 recommendations for how you can improve the quality of your life with HIV — while also improving its quantity.

1. Find Your Purpose

Do what excites you. Rediscover your gifts and talents — or take the time to develop new ones. Find time to serve others. You can gain and maintain a sense of personal control — which, in turn, can improve your general health.

Whether it happens on the day of their diagnosis or evolves slowly over time, people living with HIV often rethink their sense of self. Having a sense of purpose is correlated with lower stress, better health outcomes and an improved overall sense of well-being, Shock, shame and stigma can throw all of that off balance — but those same obstacles make it all the more important that you find your center and gain confidence in it.

Tips for Living With Purpose

One or more of the following six points can be easily woven into a conversation in any setting and supports the development of personal empowerment, which, ultimately, promotes emotional and physical health.

  • Do what excites you
    While a portion of people living with HIV may have depressive symptoms that prevent them from truly experiencing pleasure, most are rarely challenged to consciously pursue their passion. Managing one’s health requires great expenditure of energy and often leaves few resources for the pursuit of pleasure. Asking the patient what he or she personally finds exciting can be a pathway to discussing healthy habits as well as an opportunity to get a more holistic impression of the patient.
  • Find time for service
    There have been many studies about the health benefits of volunteering and service. The Hindu concept of seva, or selfless service, recognizes this, as do countless traditions around the world. Expending effort on behalf of others expands one’s connectedness, a critical issue for persons living with HIV, and rewards one with the satisfaction of assisting someone else while positively impacting one’s own health.
  • Differentiate self-care from selfishness
    It is natural to have needs and it is healthy to express them, yet many patients find it difficult to discern self-care (and being worthy of that care) from being selfish. HIV-related stigma and shame can reinforce false beliefs about worthiness, resulting in feelings of guilt when someone acts in his or her own self-interest or asserts a need. I encourage my patients to become familiar with their own undermining self-talk and practice corrective affirmations to help them embrace and express their needs and feelings. Changing this self-talk can be slow and frustrating and requires ongoing support. It is helpful to refer them to a group where they can practice expressing themselves and receiving feedback in a safe setting.
  • Rediscover or develop gifts and talents
    Finding one’s creative voice and sharing it with others promotes healing. There is a feeling of happiness in our group when a member begins drawing again or starts singing simply for the joy of it. A powerful creative spirit is released when individuals are encouraged to develop their unique ability to express themselves. Everyone touched by that person experiences a bit of healing. Encourage your patients to proudly express what makes them unique.
  • Discern between planning and worry
    Many people living with HIV spend an extraordinary amount of time worrying. Their focus can be something ambiguous, such as future health outcomes, or very specific and relevant, such as a health concern or access to medication. I have found it useful to point out the difference between worry, which lacks focus and is counterproductive, and goal-directed planning. By understanding this distinction, a solution-focused process can be applied to any given problem. This is a much more empowering experience than the circular reasoning inherent with unfocused worry.
  • Declare yourself
    At the end of a workshop on empowerment that I developed with a colleague, participants are asked to stand in front of the group, make eye contact, and “declare” themselves in a strong, clear voice (for example, “I am …” a survivor, a strong leader, a proud woman, a healer, etc.). At first, most people cast their eyes downward, their voice falters, and they pronounce their declarations in the form of questions. The group is asked to help by pointing out strengths the individuals might not see about themselves or simply don’t believe. If it’s not convincing, the group asks the person to repeat it. Finally, when someone’s verbal expression connects with his or her purpose and power, a different energy visibly takes hold.

Opportunities abound to help others reframe beliefs or reflect what may not be obvious. As health care providers, we can encourage (and sometimes gently push) our patients to reclaim what may have been lost when they were diagnosed, or what may have never been present. In either case, reclaiming personal power benefits both the individual and the community.

2. Quit Smoking

If you smoke tobacco or e-cig , you’ve no doubt already heard and seen an endless stream of efforts urging you to quit. Maybe you’ve already tried to quit and it hasn’t stuck; maybe you feel you’re just waiting for the right time; or maybe you just feel it’s not important, or even realistic, given everything else you’ve got going on in your life.

If you feel any of these things, you’re far from alone: Roughly 42% of people with HIV in the U.S. smoke, according to a 2013 study,  a rate twice as high as among the general population. And quitting tends to be harder for people with HIV.

But if you care about your health (and you wouldn’t be reading this unless you did), there may be no more important step you can take than to ditch the cigarettes. Smoking reduces a person’s lifespan more than HIV itself — and HIV-positive folks who smoke have dramatically higher odds of heart attack, lung cancer and pneumonia than people with HIV who don’t smoke.

As recent research testifies, there are well-defined paths people with HIV can take — often with the help of their health care providers — to get themselves firmly on the road to a tobacco-free life.

3. Work It

A solid job isn’t just good for the piggy bank. The right work can also be good for the spirit: It can help you find a sense of purpose (the importance of which we talked about earlier) and can even be good for your health.

Employment and HIV can sometimes be difficult to navigate, especially when stigma and discrimination rear their ugly heads. But discrimination against people with HIV is illegal in the United States, and there are great resources out there to help people with HIV get the training and support they need to find and keep a job.

4. Get Nutritious

It’s easy to overlook the importance of the food we cram into our faces every day for keeping us healthy. But good nutrition — eating both the right kinds and the right amounts of food — can bring a whole host of health benefits, including weight management, energy, a stronger immune system and more resilient organs (including heart and bones). It can even help reduce the inflammation associated with so many HIV-related health issues.

Even top HIV doctors have different nutritional advice  for HIV-positive people. What they tend to agree on, however, is that dietary changes can often help you avoid taking additional medications that may interact with your HIV medications or potentially cause their own side effects.

You can fix most of your health problem with a change in diet,

5. Take Supplements Cautiously

Speaking of pills, many people consider vitamins, minerals, and other supplements to be an essential part of their daily diets. In some cases, this may be true — particularly when they’re prescribed by a doctor or they’re treating a deficiency that diet/exercise changes alone can’t fix. HIV medical experts tend to agree, however, that dietary supplements are not automatically a good idea and that it’s important to speak with your doctor before taking supplements while you’re on HIV meds.

For sure, the right mix of vitamins and supplements can complement a healthy diet and help fight the long-term effects of chronic health conditions. But it’s important to make sure that you’re buying supplements you can trust — and that the pills you’re dishing out hard-earned cash for are real worth it.

In addition, a range of supplements can potentially interact with HIV medications. This is a major reason why it so important to communicate closely with your health care team about taking them. (Of course, taking supplements instead of HIV meds is not a good idea; there are usually workarounds that can allow you to take essential supplements while remaining on successful HIV treatment.)

6. Manage Stress

Easier said than done, we know. Stress is a daily reality for plenty of us, and trauma often looms large in the life history of people with HIV.

But whether it’s small daily aggravations or major ordeals, stress affects not only your mood, but also your quality of life. Research suggests, for instance, that stress can influence viral load and CD4 count  Taking care of your mental health — addressing anxiety, depression, trauma and other challenges frequently seen in people with HIV — can help you manage HIV better and lead to a more vibrant life.

That’s why it’s important to stop and recognize the signs of stress and what might be causing it, take practical steps to address it, and reduce its hold on you.

7. Heed the Bigger Health Picture

It’s becoming less and less common these days to hear someone say that a person “died from HIV” — that is, developed an AIDS-related opportunistic infection.. Instead, when people with HIV fall ill, it tends to be from the same health problems that everyone encounters: cancer, heart problems, organ damage (to the liver, kidneys and bones) and the like.

There’s still a great deal of debate about the effect HIV has on these health issues (though HIV-related inflammation seems to play a key role). But there’s little question that, by getting regular health checkups and paying attention to potential symptoms, you can both help prevent additional health issues from arising and receive prompt and effective treatment when problems emerge.

There is a wealth of expert advice available and plenty to learn about potential health concerns that aren’t considered to be directly related to HIV.

8. Love Yourself

All people, no matter what their HIV status, deserve to be in loving, supportive relationships. Abusive, violent or unhealthy relationships decrease the quality of many people’s lives, but some fear that if they leave their partners, no one else will want them.

Reliable, judgement-free support can be hugely valuable to your health and well-being, whether it’s found through a romantic relationship, family, close friends or a support group. But it starts with accepting that you’re worthy of love and respect.

Likewise, figuring out how, when and whom to tell that you’re HIV positive can feel like walking through a minefield — but it all starts by finding strength within yourself.

9. Avoid and Treat STIs

HIV, of course, is a sexually transmitted infection (STI). But it’s often not the only one that an HIV-positive person has to think about. Having an undetectable HIV viral load means that you have virtually no risk of transmitting HIV — but you can still acquire or transmit other STIs.

In fact, STIs are common among people with HIV, particularly (and increasingly) gay men. But most are easy to detect and treat. Good thing, too, because if they’re left undiagnosed and untreated, many STIs can become serious; HPV, for instance, is a major cause of cancer in HIV-positive people.

There’s great information and advice available for HIV-positive people about STI prevention and treatment, whether you’re a gay man, a woman or anyone betwixt and between.

10. Curb Alcohol and Drug Use

Addiction and HIV have a long, close relationship. Finding a way to break them up can be one of the harder things a person with HIV will ever have to do. TheBody.com is home to many stories by and about HIV-positive people who have dealt with substance use in their lives. We also have an expert who has answered tons of questions about alcohol, meth, poppers and plain marijuana, among many other topics.

There are few factors that can reduce the length — and quality — of an HIV-positive person’s life as much as recreational drug or heavy alcohol use. On the flip side, recovery can completely turn a person’s life around (as well as the lives of friends and loved ones).

There’s a wealth of information out there about how to seek help for addiction — as well as how to use safely if you inject drugs. For people in gay or queer communities who use meth, tweaker.org offers non-judgmental information and resources for reducing harm and finding help.

 

 

 

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