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I Tested Positive for HIV: Now What?

Even though HIV is no longer the “death sentence” people once perceived it to be and people living with HIV often live healthy, long lives, stigma still exists.

HIV stigma refers to negative attitudes and beliefs about people living with HIV, often seeing them as a socially-unacceptable group. Some forms of HIV stigma include the belief that only certain people can get HIV, which often increases stigma towards other groups, like homophobia directed at the 2SLGBTQ+ community.

Many people still believe that HIV only affects gay men and people who use intravenous drugs.
But HIV can affect anyone!

HIV stigma also occurs when people make moral judgements about people who take steps to prevent HIV transmission, such as using safer sex or drug supplies, or taking preventative medications like PrEP. Rather than looking at the science and effectiveness of prevention, some people see open conversations and actions around sex and drug use as immoral, or enabling sex and drug use. This type of thinking also leads to HIV stigma, because some people may think that others somehow “deserve” to get HIV because of their choices, which they deem “immoral”, rather than seeing HIV transmission as the public health issue it is, and the multitude of ways it can occur outside of sex and drug use.

HIV stigma can also lead to discrimination in all areas of life; from healthcare, such as doctors or other healthcare professionals refusing to provide services to someone living with HIV (which is illegal), to socially isolating someone because of their diagnosis.

HIV stigma, like any other form of stigma, ultimately comes from ignorance and fear.

Many peoples’ ideas of HIV still come from their interactions with the disease in the media in the early 1980s, and don’t understand what it means to live with HIV today. To help stop HIV stigma, talk about HIV, STIs, safer sex, and safer drug use more openly - this helps normalize the subject and may help educate people who hold outdated views of HIV.

Navigating a Positive HIV Result:

- It’s normal to experience a wide range of emotions when getting a positive HIV test result. Although medications for HIV have vastly improved over the years, getting diagnosed with an illness can be scary, as it can change many aspects of your life.  

- You may have feelings like shame, guilt, resentment, anger – these are all common! Talking to other people living with HIV at a local HIV organization may help you feel less alone.  

- It will have an impact on your life, but there are ways to manage the illness and live a long, healthy life.

- Talking with a doctor as soon as possible after a diagnosis is key – and being honest about your lifestyle, your ability to adhere to medication, and how you are feeling is important for your doctor to know.

For HIV treatment to work properly, adherence (which means taking the medication as prescribed – like with or without food, in the morning or night, etc.) is critical.

Finding what medications and other aspects of your treatment work for you is vital. As a patient in the healthcare system, you have the right to ask questions and help decide what treatment plan will work best for you.

DISCLOSING A POSITIVE HIV RESULT:

Disclosure means making information known, and when talking about STIs and HIV, this refers to telling people about your diagnosis. The experience of disclosure will be unique to each person and the relationship you have with them, as well as their own values and biases. It will depend on your identities and contexts.  

Its important to realize that in most cases, disclosure is voluntary and up to your own discretion. Deciding when and who to disclose your status to should be your decision.

You are not legally obligated to disclose your HIV status to your doctors, to your employers (present or future), or anyone else in your life if you don’t feel comfortable doing so.

The only legal obligation you have for disclosure in Canada is to a sexual partner before a sexual activity with a “realistic possibility of transmission of HIV” – this often means you are obligated to disclose your status to partners if you are planning to have sex. The only form of sex in which an HIV positive person has no obligation to disclose their HIV positive status is when they are using a condom for sex and have a low viral load, or, are undetectable, as according to the Supreme Court, there is no realistic possibility of transmission – otherwise there could be legal repercussions.

Knowledge of basic HIV transmission and treatment is imperative before disclosing to a partner or other close individual. Understanding your diagnosis can also help you with the potential positive or negative outcomes you may get when disclosing. For long-term romantic relationships, you can “test the waters” by bringing up discussions about HIV, U=U, or other STIs to assess whether they may have a positive reaction to your disclosure and may be open to learning more about HIV and prevention. Disclosing your status can also allow for further intimacy in a relationship, but make sure you feel comfortable and safe before doing so.

For casual or anonymous sex, if there is no possibility of transmission of HIV, you don’t have to disclose, but if you want to, you can bring it up in conversation by discussing safer sex while talking about what type of sex you want to have, or bringing up STI testing or other prevention methods like PrEP. Encouraging discussions around STIs when talking about sex makes it more comfortable and safer for anyone engaging in sex, whether they have an STI or not!  

Make sure you feel safe in the environment you are planning to disclose in – whether that is in a workplace, in a personal relationship, or at home – your safety is very important.

Telling a healthcare provider, like your doctor or dentist, about your HIV-positive status, can be essential to getting the best care possible. For instance, some dental problems may signal an opportunistic infection. If your dentist is unaware of your HIV-positive status, you might not benefit from this information. In other circumstances, disclosing your status can also help you avoid unexpected drug interactions.

Telling others that you are HIV-positive can be stressful. In some cases, you may fear rejection, violence or discrimination, or you may be worried that your HIV-positive status will not be kept confidential. These concerns are very real for those living in tight-knit communities and in communities where sexuality and HIV are taboo. Racism, gender norms, economic conditions, cultural, and language barriers are all factors that can affect a person’s ability to disclose their status, take precautions to reduce risks of HIV transmission, and access support. Contacting your local AIDS organization can be a good first step.

Disclosure of HIV positive status is an important strategy for reducing HIV transmission, however, when this is the only focus, HIV disclosure can be a traumatizing, isolating, and painful experience. In order to adequately and meaningfully support people living with HIV, other factors must be taken into consideration. Disclosure can be an empowering experience for people living with HIV if there is adequate support and it is used to strengthen and deepen relationships rather than out of a sense of obligation.  

Remember: HIV doesn’t have to control your life. With the right tools and supports, you can have power over it.

Written by Sam Davin at AIDS Community Care Montreal

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