Thanks to advances in treatment, people diagnosed and treated for HIV in the early stages of infection can live normal to near-normal life expectancies. Even those first treated during the advanced stages are able to bring the virus under control and avoid many severe opportunistic infections.
Despite these advances, living with HIV still has its challenges, both physical and emotional. There may also be problems dealing with finances or finding adequate care. These issues may be all the more impactful for those who may live in communities with limited resources or are faced with high levels of stigma and isolation
This article takes an in-depth look at many of these concerns and what people can do to not only cope with HIV but to live fulfilling lives – with what is today, a chronic, manageable condition
Despite recent advances in treatment, finding out you have HIV can be overwhelming. Even after you’ve come to terms with the diagnosis and settled into treatment, anxiety and depression are not only possible but common. You may not only be concerned about your own health and future but may feel stressed about how HIV may affect those around you.
All of these feelings are normal, and it can take time to process them fully. Fortunately, there are steps you can take to better cope.
Myths and misconceptions about HIV abound. They not only keep people from seeking the HIV-specific care they need but can also make them fearful to disclose their HIV status to others.
When diagnosed with HIV, the best way to overcome these fears is to educate yourself. This starts with understanding that :
- HIV is not the same thing as AIDS.
- HIV is not a death sentence.
- HIV drugs have side effects but are not “toxic.”
- You can get pregnant and have children if you have HIV.
- You can avoid infecting others by being on HIV treatment.
The problem is that many people and communities cling to myths about HIV that are simply untrue. It is only by educating yourself that you can begin to educate others. Doing so may not only change attitudes but can also help you build a support network you can turn to and rely on.
HIV Myths in the Black Community
Conspiracy theories about HIV—including how the virus was created to kill African Americans—have led to lower rates of treatment and viral suppression among Black people with HIV. This accounts, in part, for why 43% of all new infections are among Black people.
People often credit their doctors or drugs with keeping them alive and healthy. But, the truth is that there is one person who ultimately calls all of the shots when it comes to treating HIV—and that’s you.
In the end, it is you who is responsible for taking your drugs every day as prescribed. It is you who schedules follow-up appointments and get your blood works done on time. It is you who gets your prescriptions refilled so that you don’t run out of medications.
By taking charge of your treatment, you will not only feel more in control but be better able to participate in treatment decisions. Start by learning the names of your antiretroviral drugs, how they are taken, and what side effects they may cause. Also, learn what a CD4 count and viral load are as well as how to decipher your routine blood tests.
By doing so, you can become the master of your disease rather than the other way around.
Dealing With Depression
Depression affects over 10 million Americans each year, and it is estimated that one in four adults will have at least one depressive episode in their lifetime. As sobering as these statistics are, people with HIV are at three to four times greater risk of depression than the general population.
Having intense feelings of sadness, anger, grief, or guilt are common after an HIV diagnosis. It is important to accept these feelings and to work through them with people you love and/or health professionals trained in HIV (like counselors or therapists).
It is also important to recognize the symptoms of depression and to avoid behaviors that can make the symptoms worse, like alcohol or recreational drug use.
If you are unable to cope, don’t keep silent. Ask your doctor for a referral to licensed therapists, such as a psychologist or psychiatrist, who can offer one-on-one or group counseling. Medications are also available to treat anxiety or depression if needed.
HIV and Depression Among MSM
Studies have suggested that one in three men who have sex with men (MSM) with HIV have symptoms of depression. While stigma, homophobia, and secrecy all play a role in this, those with higher viral loads appear to have an increased risk of depression while those an undetectable viral load appear to have lower rates of depression.
HIV is treated with more than just pills. Living with HIV requires you to stay healthy to not only avoid HIV-related infections but non-HIV-associated illnesses as well.
Today, people living with HIV are more likely to die of heart disease or cancer than from the virus itself. Because HIV places the body under persistent chronic inflammation, people with HIV tend to develop these and other diseases 10 to 15 years earlier than the general population.
To reduce your risk, there are several things you should do:
Prevention is key to avoiding infections when you have HIV. Getting vaccinated is one of the best ways to do this and something that everyone with HIV is advised to do.
The Centers for Disease Control and Prevention (CDC) recommends the following vaccines for all people living with HIV:
- Hepatitis B vaccine to protect against hepatitis B
- Herpes zoster vaccine to protect against shingles
- HPV vaccine to protect against human papillomavirus
- Influenza vaccine each year to protect against seasonal flu
- Meningococcal vaccines to prevent meningococcal disease
- MMR vaccine to protect against measles, mumps, and rubella
- Pneumococcal vaccines to protect against pneumococcal disease
- Tdap vaccine to prevent tetanus, diphtheria, and whooping cough
- Varicella vaccine to protect against chickenpox
Certain vaccines may need to be avoided if your CD4 count is below 200. Speak with your doctor.
Staying Physically Fit
Regular exercise is recommended for everyone but is especially important for people living with HIV. A routine fitness plan can reduce the risk of HIV-association complications like heart disease and osteopenia (bone mineral loss). It can elevate moods and energy levels, lower blood pressure, increase bone density, and reduce the risk of atherosclerosis (“hardening of the arteries”).
The Department of Health and Human Services recommends the following fitness goals for all people living with HIV:
- At least 150 to 300 minutes per week of moderate-intensity aerobic activity, like biking, brisk walking, or fast dancing
- At least two days per week devoted to muscle-strengthening exercises, like lifting weights or doing push-ups
Studies have shown the people with HIV are twice as likely to be smokers as those without (42% versus 21% respectively). This accounts for why smokers with HIV have double the risk of acute heart disease and a 14-fold increased risk of lung cancer compared to the general population.
Studies have shown that smoking remains the single greatest risk factor for illness and death in people with HIV, reducing the life expectancy by 12.3 years compared to non-smokers with HIV.
Quitting cigarettes is the only way around this sobering statistic. Speak with your doctor to find smoking cessation tools to aid you in your journey, many of which are provided free of charge under the Affordable Care Act.
HIV and Heart Disease Among Black People
A 2017 review of studies concluded that Black people with HIV have a 26% greater risk of cardiovascular disease than Whites with HIV. This highlights the need for aggressive interventions to reduce the risk of heart attack and stroke in Black men and women living with HIV.
The fears and anxieties associated with HIV can increase the risk of isolation which, in turn. can increase the risk of depression and poor drug adherence. Reaching out to others not only helps you maintain a positive outlook but can improve your adherence as well.
Building a strong support network can help bolster your emotional well-being, particularly if you’ve just been diagnosed. Friends and family are often the first people you’ll turn to—although it can be difficult sometimes to disclose your HIV status.
To this end, you can also seek support from your medical team or find an HIV support group in your area or online. Sources for support groups include:
- Your doctor
- Community-based HIV programs
- Community-based LGBT+ centers
- Churches, synagogues, or other religious organizations
- HIV.gov, managed by the Department of Health and Human Services
- Your state HIV/AIDS hotline
- Facebook community pages
Although public awareness about HIV has improved, there is still stigma attached to the disease in many communities. In some people’s minds, HIV is synonymous with promiscuity, unfaithfulness, and irresponsibility. These harmful beliefs not only put people at risk of discrimination and abandonment but suggest that they are somehow “to blame” for getting infected.
Overcoming stigma is not easy, but there are a number of tools that can help. A good place to start is by understanding your rights under the Americans with Disabilities Act (ADA) as well as your right to privacy under the Health Insurance Portability and Accountability Act (HIPAA).
You should also consider disclosing your HIV status to people you trust. Although you can’t always predict how people will react, having friends on your side can help build your confidence and provide you with allies in the event of a conflict.
By educating yourself and others, you can help dispel some of the myths surrounding the disease and overcome any unwarranted feelings of shame or guilt.
HIV Stigma Among Black MSM
In addition to physical vulnerabilities to infection, Black MSM are faced with high levels of poverty, unemployment, incarceration, homophobia, and HIV-related stigma. Together, these vulnerabilities are estimated to increase the lifetime risk of HIV to no less than 50% in Black MSM.
Dating and Relationships
Although people with HIV can enjoy healthy sex lives, dating can still be extremely stressful. Telling a close friend you have HIV is one thing; sharing this information with a romantic interest is an entirely different matter.
If the prospect of disclosing your HIV status seems daunting, take a step back and educate yourself about safer sex and the risk of HIV transmission. By doing so, you’ll be better equipped to broach the subject with confidence rather than embarrassment. Even if your partner decides against a sexual relationship, you will have at least removed labels of “blame” from the conversation.
It is also important to understand that by sustaining an undetectable viral load, your risk of infecting others is reduced to zero.
Your sex partner can also protect themselves by taking HIV pre-exposure prophylaxis (PrEP). This preventive strategy can reduce your risk of getting HIV by up to 99% if taken daily as prescribed.
Even if you’ve sorted yourself out emotionally and feel optimistic about living with HIV, you may still be faced with practical and financial stresses. While this can occur with any chronic condition, the stresses associated with HIV can be considerable given the high cost of treatment.
Finding the Right Specialist
There are many things to look for when searching for an HIV specialist. Ideally, they will act as a partner in your care. They will be open to discussing treatment options with you and be able to convey information in clear, understandable language. On top of this, they need to accept your insurance and ensure that all other providers, including labs, do so as well.
To find an HIV specialist, contact your local hospital, call HIV/AIDS service agencies in your area, and ask others with HIV for recommendations. When meeting with the doctor, be sure to ask about the size of their HIV practice, what services they offer, how long it takes to get an appointment, and who will actually be seeing you during routine follow-ups.
It is also important to know your rights as a patient, including how your privacy is protected and with whom your medical information is shared.
Paying for HIV Care
Paying for HIV care can be a considerable undertaking even with insurance. Even if you are able to find a plan with a low deductible and low monthly premium, you might still be hit with high copay or coinsurance costs.
There are several ways to reduce your out-of-pocket expenses if you have HIV:
- Work with a health insurance navigator who can help you select the best plan based on your medical needs, prescribed medications, and estimated utilization costs.
- Check with the Health Insurance Exchange to see if you qualify for subsidized coverage under the Affordable Care Act.
- Check your eligibility for manufacturer copay or patient drug assistance.
- Contact the Ryan White HIV/AIDS office in your state to see if you qualify for free HIV medications under the AIDS Drug Assistance Program (ADAP).
Frequently Asked Questions
What is the average lifespan of someone with HIV?
Does having HIV affect your mental health?
Depression affects as many as 22% to 61% of people living with HIV. Women are more likely to experience this than men or transgender people. Factors influencing the risk of depression include having a low income, being unemployed, and experiencing symptoms or side effects of treatment.
What does an undetectable HIV viral load mean?
An undetectable virus means that there is so little virus in your blood it can’t be detected with current testing technologies. It doesn’t mean that you are “cured,” but rather that the virus has been suppressed.