Someone I Know With HIV Just Died. What Does That Mean for Me?

You know someone — a friend or acquaintance or maybe even a family member — another HIV-positive person who has passed away. I know this is a pretty dark topic. And I'll admit that it's hard for me to write about death with my usual upbeat message. But recently, several clients talked with me about someone they knew who had been living with HIV and recently passed away.

Whether it's the loss of a close friend, a Facebook aquaintance or just someone we've se read about or seen on TV, when another poz person dies it can leave the rest of us struggling with our own issues.  

One client told me about a friend he met through an online support group. They were on the same medication. Here’s what he said: 

“We have been in touch every day or two for the last couple of years. He’s had some rough spots, more than I have. Some kidney problems. A little heart thing. During those times, I might not hear from him for a week or so. Then he would be back. This time a couple of weeks went by. I kept emailing and nothing. Then I got a message from a family member telling me he had some complications and didn’t make it this time." 

The message impacted him.

“I don’t know how to react,” my client said. “I can’t think about him without thinking about myself. It brings up a lot of fear. And questions. Like is this the right medication? And how is it going to affect me over time? And even wondering whether he was as compliant as he should have been, and kind of hoping he wasn’t. It’s like I almost want to make his death his own fault. And I know that’s not fair.” 

I encourage my clients who are living with HIV to not focus on limitations, but instead to focus on what’s possible. And when I use that word, "possible," I mean the good things in life, like friends, family, and continuing to do the things they enjoy. Not the possibility of decline. Not death.

We all know HIV medications are not a walk in the park. We know some people tolerate the medications better than others do. HIV drugs may have negative side effects over time, including some long-term complications we simply don't know about. And we know that not everybody is consistently compliant, or takes the best care of their health. 

What I'm saying is that there are many reasons why someone with HIV might die. Some of those reasons have nothing to do with a person's HIV status. But others are directly related to HIV or the medications prescribed to treat the disease.  At the time you learn of a person's death, the reasons may not be clear. They may never become clear. Or, the cause of their death may be very clear. 

Either way, that can be a lot to have to sit with. Most people have issues with their own mortality and being poz can intensify those feelings.

As my client said, learning that someone with HIV has died brings up a range of feelings. One of them is fear. You may already be dealing with your own fear factor. Or maybe you thought the fear was behind you, but it finds its way back when you're reminded that although HIV is a chronic, manageable illness and you can live as long as your peers, it can also still lead to death.

Guilt is another common response to the death of someone we know. Guilt about doing well when they clearly weren’t. Guilt at finding yourself hoping their death occured because they didn't take care of themselves. And of course anger. Like when you are again reminded about the unfairness of life. 

It’s only human to have feelings that are all over the place. Learning about a death has a way of doing that to us. It’s pretty high on that list of things we would rather not think about at all. Until we have to. 

So where does that leave you if have learned of someone dying from HIV-related cuases?   

First, let yourself feel. As I said, a lot of feelings may come up for you. They’re only feelings. And they’re normal, so don’t judge yourself. And don’t hold them in where they can build up and fester. Release them into the light of day. Express the emotions you are feeling, even if you don't share them with someone else. Write, draw, scream. Let it out. 

Get support. Find a safe place to talk about how you feel. Even if the person who has died wasn't close to you, it’s still a loss in its own way. Sit down and talk it out with someone who can listen without trying to tell you what you should do. Saying it out loud can help you sort out your thoughts and feelings. 

Accept that life is uncertain. If you’re living with HIV, chances are you have already come to terms with the changes that life can bring, whether you’re ready for them or not. But knowing that the person who passed was living with your condition can give additional meaning to uncertainty. There are things you can do to stay healthy, but none of them come with guarantees.

Know that you won't always know. It’s only human to have questions and want answers. Why did this happen? Were there complications? Were the medications working? Was she or he staying compliant? You may find the answers to these questions. But you also may not. 

Review your foundation. Talk back to the fear factor by reminding yourself of your strengths and your support system: A physician you trust, family and friends, being compliant with your treatment regimen, following your self-care routine, having a spiritual connection. Embrace the things (and people) that keep you grounded when things feel shaky.

Have a talk with your doctor. Most likely, the news of a death will bring up concerns about your own health and medical future. Again, that’s just being human. So sit down with your doctor and review your treatment plan. Ask questions. Get some reassurance that you are doing everything you can to stay healthy. And if not, see what changes you need to make going forward. 

Recommit to your own self-care. As I mentioned above, one lesson that HIV teaches us is that we are not in control of everything in life. However, what you do have control over is maintaining your own wellness. This is a good time to recommit to taking the best possible care of yourself.   

Ask for help if you need it. What was it like for you when you were first diagnosed? Maybe you pretty much sailed through this process – you got the news, you got your meds going, you stayed optimistic. Knowing someone with HIV who has died can bring up feelings that you didn’t experience when you were first diagnosed. A delayed reaction can hit you hard. If so, this is a good time to sit down with a mental health professional to sort your feelings out and learn some new coping skills. Don’t go through this alone. 

Remember to embrace the day. Every morning, think of something to be grateful for. Treat others with kindness. Be good to yourself. Do something to make the world a better place. We can honor those who have passed on by making the best of each new day, taking another opportunity to be the best we can be in life. 

Unexpected deaths can remind us of just how precious life is. To treat yours like the gift it is, maintain your own health by working closely with your healthcare professionals, staying on top of your medication regimen, and getting lots of support.

Take good care of yourself. Always.