Navigating HIV Disclosure, Love, and Health Challenges

I shared my HIV status with my husband on the very first day that we met. This was in 1998, and it was a risky thing to share. HIV stigma remains a problem that all of us must deal with, but it was especially pervasive during the plague years and before the availability of PrEP.

Disclosure was also very new to me. In those hopeless years, many of my encounters never involved discussing HIV. If nothing was said, I assumed the other person wasn't worried about such things, either because they felt they would eventually be exposed to the virus or because they already had been.

Navigating HIV disclosure

Then, after the death of my first partner, just as protease inhibitors came onto the treatment scene, my opinion on this began to change. I saw people return from the brink of death.

I watched as my T-cells skyrocketed and my viral load disappeared. The sudden hope that we might survive was a sobering tonic, and I began to share my status with people I was dating.

Still, I struggled to connect with other people. After helping my partner pass from this life, I feared putting that same burden on someone else should we fall into a relationship. I put the thought of falling in love again out of my head for a while.

It was not a pleasant time for me, but luckily, Scott came along and showed me that love could conquer all, even the stigma of HIV. For almost 30 years, we have been in a dual-status relationship.

Where are we now

Recently, the two of us experienced a dual cancer diagnosis. His experience was scarier than mine, but I'm happy to share that after chemo and radiation therapy, we are both on the path to a clean bill of health.

However, the experience reminded me that our relationship has been built on truth in our dialogue about health issues. I also realized that I had not involved him in my HIV journey as much as I previously had. As we embark on this next phase of our life, I am bringing some practices and ideas back to the table to reenergize that engagement. I'm not a therapist but want to share what has worked for us.

Building support in long-term relationships

I can't expect him to remember all my medications, so I need to make sure they are written down and accessible for him. The same is true of my medical care wishes. We have completed our paperwork, shared it with my doctor, and filed it with my other information on a flash drive.

It is up to me to set a time and place to discuss these things. I cannot wait until it's convenient. I also must be clear on my future strategies and treatment options.

This can be the most challenging part, but while I am able, I must make these things happen and ensure that the work is done. That part is my responsibility so he can care for things when I can no longer.

Communication and support with a partner

I can't hide anything about where my health is now. I have always communicated my test results, whether good or bad. But I must remember to share my conversations with my doctor, no matter how uncomfortable it may feel. Should I find myself incapacitated, I believe it's essential that he can continue the dialogue, even if I can't.

The HIV treatment journey isn't all numbers and results, though. There are intense emotions connected with this battle. Finding the time to discuss my fears and hopes is essential to letting him know my state of mind.

As a long-term survivor, I often experience periods of melancholy and depression. It isn't easy to open up during those episodes. And it is not something I want to talk about when I'm not in a dark mood. But I must work to find methods to communicate to him that these are a natural reaction to the trauma I experienced in the past.

I must respect that it can't be a constant barrage of information. Boundaries must be set so he is not overwhelmed with dialogue and feelings. He's my partner in this, not my therapist.

Facing the changes

We have been together for almost as long as I have been HIV-positive. Likely, we will continue growing old together. As my body changes, I need to communicate that to him. I don't want him to assume anything, and I need to face what I am going through openly. There are long-term care plans to consider. That means researching my options, making decisions, and setting up the paperwork to ensure our wishes are fulfilled.

There are so many co-morbidities that come with long-term treatment of HIV. I can't bury my head in the sand and pretend I'm not affected by those. I must be strong, keep up with my annual physicals and checkups, and act when needed.

I know these are all the tasks I must commit to so that he is prepared for possible outcomes. While I am healthy, using this time now will hopefully show him the strength he will have to call on in the future.