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Living with HIV

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By Editorial Team

6 min read

Reviewed by: HU Medical Review Board | Last reviewed: September 2019

Life with HIV can bring along with challenges and new considerations, with several common HIV-related issues including the following.

Disclosing your status

If you are living with HIV, the thought of disclosing, or telling, your status to others may be incredibly overwhelming and scary. These are completely normal feelings to have. Despite all of this, talking about HIV and building a support network that you trust is critical in coping with your diagnosis and sticking with treatment. Additionally, disclosing your status may be required in some cases, such as with sex and drug-injecting partners (depending on the state you live in).1 However, it’s important to remember that not everyone needs to know about your diagnosis, and those you do tell can be informed in the way you want them to be. You can control when, where, and how you tell those who you want to know or who need to know.

When disclosing your status to someone, it’s important to feel confident in your mutual trust and respect, test the waters first if need be, create a positive and safe environment for discussion, be prepared to provide information, and remain open to regular check-ins on the topic of HIV.

Although there are many instances in which you have full control over who you tell about your HIV status, there are some scenarios in which disclosure may be required. For example, you can choose who, if any, of your friends or loved ones you tell and when. However, since HIV can be transmitted via sexual or blood-to-blood contact (such as during rough sex) many states have laws requiring that an HIV-positive individual disclose their status to current sex partners (or drug-injecting partners), and alert past partners of their status as soon as they become aware they have HIV. While this may be frustrating, it is important to consider in order to protect yourself from future legal action as well as to protect others from getting the virus. However, in most locations there are services available that can help you remain anonymous in these situations or disclose for you if need be.

Stigma and HIV

Since the first cases of HIV and AIDS were reported in the population, significant stigma was attached to them. When someone is stigmatized or experiences stigma, it means others have a negative attitude or perception of them. In the case of HIV, this stigma is present due to long-standing misconceptions and a lack of education on HIV that exists across the world. If stigma or negative beliefs lead an individual to treat someone differently, it is called discrimination. Individuals with HIV experience stigmatizing attitudes regularly, and it can impact their self-esteem, desire to seek HIV testing and treatment, and overall health outcomes.2-4

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Originally, HIV stigma was related to a lack of knowledge on what exactly HIV was. Over time the public has increased its understanding of HIV, and stigma has been reduced. This has been partly due to campaigns to increase awareness, as well as several high-profile cases of HIV involving children, celebrities, and other individuals who didn’t fall in line with traditional stigmatizing beliefs and HIV stereotypes. This increased awareness and openness to talking about HIV has helped pave the way for a greater level of understanding, however, we still have a long way to go.

Dating when HIV-positive

One aspect of life with HIV that can be especially challenging is dating. In certain cases, you may find yourself in a situation in which you consider disclosing your status to a potential partner. Several common considerations that need to be made before dating with HIV include making sure you’re ready to date and have a strong support system in place in case things don’t go as hoped, coming up with a plan for disclosure, and being prepared to provide information on HIV and transmission to your potential partner.

It’s important to remember that if you are HIV-positive and your partner is HIV-negative, there are steps that can be taken to reduce the risk of transmitting the virus to your partner. Taking ART (antiretroviral therapy) exactly as prescribed may lead to a viral load (amount of HIV in the bloodstream) that is undetectable. When a person’s viral load is undetectable, their risk of transmitting the virus is essentially zero. This idea is referred to as U=U, or undetectable=untransmissable.5-7 Additionally, your partner can take PrEP (pre-exposure prophylaxis), a daily medication used to further reduce an individual’s chances of getting the virus.8

Traveling with HIV

Receiving an HIV diagnosis should not impact an individual’s ability to live their life to the fullest. This includes participating in activities like traveling. While certain considerations and extra planning may be needed, traveling with HIV can be manageable and low-stress. Common strategies used by individuals with HIV who travel include planning ahead, packing plenty of medication and documentation, being prepared in case of a medical emergency, receiving necessary travel vaccinations, and practicing good food safety and infection prevention. Ultimately, your healthcare provider and clinic can be a big help when planning a trip with HIV.9

Family planning

Living with HIV does not have to impact an individual's ability to start a family. Family planning is being able to to make the choice on whether or not to have a child and taking the appropriate steps to carry out that choice. Whether or not pregnancy is desired, there are options available. It’s also important to remember that family planning choices are dynamic, and can change over time. If a person doesn’t want to start a family at the moment, they can still change their mind later, and vice versa.

No matter what stage you’re at or what preferences you (and your partner) have, there are some important considerations when it comes to family planning within the HIV realm such as contraceptive choice as well as reducing the risk of HIV transmission during both conception and pregnancy.

Legal support

There are a variety of reasons that an individual with HIV may need legal services. Some of these may be related directly to being HIV positive, while others may be unrelated. HIV-specific reasons for needing legal support include, but are not limited to:

  • Issues surrounding HIV in the workplace, such as disclosing HIV-related medications or status
  • Issues surrounding HIV and privacy rights
  • Discrimination, including, but not limited to, housing, health care, employment, and education discrimination against an individual with HIV
  • Family support services or issues around guardianship of children
  • Creation of living wills and designation or health care proxies (individuals who can make decisions if you are unable to)
  • Testing for HIV without consent
  • Interpersonal violence or domestic disputes
  • Navigating HIV-specific laws in each state (laws surrounding behaviors that could transmit HIV)10-12

If you are in need of legal support, a great place to start is with your healthcare provider or healthcare clinic. They may be aware of resources in your area or have a social worker on staff who is familiar with local legal options.

Coping with depression and anxiety

Depression and anxiety are both common mental health conditions. Depression is characterized by a significant lack of energy, hope, excitement, or joy. Individuals who are depressed commonly have a sad mood. Anxiety refers to being in a constant state of worry or fear, and the high levels of energy and restlessness that can come along with those feelings.

Receiving a life-changing diagnosis like HIV can take a toll on anyone. For some, the diagnosis itself may lead to feelings of anxiety or depression. For others, real or perceived stigma, relationship difficulties, financial struggles, and fear that can accompany life with HIV can trigger mental health issues. Occasionally, medications used to suppress HIV can have mental health-related side effects. Overall, the risk of depression and anxiety among individuals with HIV is greater than for those without HIV.13,14

Positively managing depression and anxiety (and other mental health conditions) is important for maintaining strong overall health and wellbeing. Common methods for managing depression and anxiety include:

  • Seeking professional support and treatment
  • Finding a support network
  • Exercising and eating healthy
  • Participating in positive hobbies

If you or a loved one are having thoughts and feelings of harming yourself, please consider contacting the National Suicide Prevention Lifeline anytime at 1-800-273-TALK (1-800-273-8255). To find mental health providers in your area, you can call the Substance Abuse and Mental Health Services Administration’s (SAMHSA) National Helpline at 1-800-662-HELP (1-800-662-4357), and they can connect you to resources in your area.