Living with HIV: Advice from a Therapist on Healthily, Happily Navigating a Post-Diagnosis Lifestyle

Living with HIV: Advice from a Therapist on Healthily, Happily Navigating a Post-Diagnosis Lifestyle

by Michael Cotayo, LCSW 

Being diagnosed with HIV can be one of the most devastating experiences of your life.

A person who is newly diagnosed may be feeling a combination of guilt, shame, depression, regret, anxiety, or any other number of emotions that you’d expect to experience after being told you have an autoimmune disease that there is no cure for, and it could possibly cause damaging and life-threatening health risks. Indeed, it is a diagnosis that tells you your life will never be the same again.

But with the right tools, support, and knowledge, hope awaits. Here’s how to navigate and choose happiness after a HIV-positive diagnosis.

Coming to terms with your emotions after learning you have HIV

When diagnosed with HIV, your life may feel turned upside down. Your hopes and dreams for the future can seem like they are pushed to the side or even annihilated at the time of diagnosis. It is important to be kind to yourself; and it is equally important to have a support system. This will be the biggest thing that you can do for yourself. A diagnosis like this can make a person feel like they are the only one, that they are all alone. It is very important that you have friends or family that you can talk to in those initial months after your diagnosis. 

How to tell your loved ones about your diagnosis  

This fear and stigma attached to HIV makes it difficult for most people to come out about their HIV status. Disclosure is one of the most difficult topics when it comes to HIV. How do you tell someone that you have been diagnosed with HIV? This is hard, and for some nearly impossible.

 I know people who have kept their diagnosis a secret. They live in isolation and they are constantly afraid that the secret will be found out. What often keeps them silent is the fear and worry they experience. Often, they feel afraid that if they tell someone their secret, they will be judged, ridiculed or shunned. The fear around disclosure often keeps the individual isolated.

How to find support from loved ones, groups, and free resources

If you feel that no one in your life will understand what you are going through, find a support group. No one should have to go through this process alone. However, if you do want to tell those who are closest to you, here are some suggestions.

Start with your friends – they often love you, despite (or because of!) your flaws. Pick the person you feel will always have your back.

If you don’t feel like you have someone like that in your life, call a hotline. The GMHC hotline, (800) 243-7692, is a great resource for people who have questions about HIV, and if you are newly diagnosed, they will be a great support in helping you in your coming out process. Another resource is HIV Nightline: 800-628-9240. They are open 24 hours/7 days a week.

Dating with HIV: What you need to know

The disease has definitely changed over the years, and the things I realize is that unless you are directly affected by, or infected with HIV, it is still a disease that people are afraid of and don’t understand. It causes extreme fear in others and can make people run for the proverbial hills. That is one of the main reasons that it is so difficult for people with HIV to start dating.

 
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Dating alone can cause anxiety, fear, worry and raise insecurities among non-infected people, but when you have HIV, everything becomes heightened. The fear around dating and disclosure is palpable. “Will I ever date again?” “Will I ever find love again?” “Who would want me?” These are all questions that go through the mind of someone who is recently diagnosed. These thoughts can cause our self-esteem to plummet and can stand in the way of us putting ourselves out there.  

Let me be the first to tell you: Yes, you are worthy of love; Yes, you can have the life you want and have always dreamed of; Yes, there are people out their who will appreciate the person you are. It just may be difficult to put yourself out there, and you may be rejected, but just because one person may reject you, it does not mean that everyone will.

The idea of when to disclose is very scary, and very personal. “Do I tell them on the first date? Do I wait? Does the three-date rule apply here? I am not here to tell you what to do, but what I can say is in order to have this conversation, you want to treat yourself and the other person with respect and allow them the space to process the information you have given them. In my experience, it is much harder for heterosexual couples to have this conversation than it is for same sex couples.

Same sex couples have lived with HIV in this country since the early ‘80s. Heterosexual couples still often feel like HIV equals a death sentence, and that couldn’t be further from the truth. One thing that we have learned about HIV is that it is a manageable disease. If a person is undetectable, they are not at risk of transmitting the virus to another person. For more information on U=U, please read this article from Plus Magazine.

Choosing a therapist to help you navigate a HIV+ lifestyle

In my experience, the type of therapy you have is not as important as who you speak to. When choosing a therapist to help you with your diagnosis you will want someone who is compassionate, understanding, and at least a little knowledgeable about HIV. The last part is important because a therapist who is knowledgeable about HIV will support you and will not shame you if you start talking about having unprotected sex with your person.

It is important to feel supported in the therapeutic alliance so that you can work through your guilt, shame, depression, regret, anxiety, or any other number of emotions that you’d expect to experience after diagnosis.

I feel very lucky to be living in a time where there have been so many advances in the field of HIV. We are in a country where our healthcare is a right, and a privilege. There are many medication options, and many of us live with the experience of only taking one pill a day. I encourage all of us to live proudly, without shame, and to become a better version of the person we were yesterday. Good luck to you on your journey!


Michael Cotayo is a Licensed Clinical Social Worker in New York City who has worked extensively with individuals who are navigating addiction and recovery. Mike identifies strongly with his social work training, and has held positions in community settings working with individuals navigating substance use challenges, HIV, sexual violence, and borderline personality disorder.