I have had something on my mind that I can’t seem to shake off. Here’s what happened. I was skimming through the newspaper and I just happened to notice an obituary. It was about a guy associated with the theater so it caught my attention. And right there, in the second paragraph, it was revealed that he died of complications from HIV. In other words, he died of AIDS. Dr. Gary, I kind of freaked out. I thought we were beyond that. At least that’s what I tell myself when I take my pill every morning.
I don’t know how to react. I can’t think about this guy without thinking about myself. It brings up a lot of fear. And questions. Like was he on the right medication? Was he really taking care of himself? I am ashamed to say that I almost want to make his death his own fault to help me cope with my own fear. I know that’s not fair.
What can I do?
Learning that someone has died from HIV-related complications 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, or tucked away, only to find its way back. Another is guilt. Guilt about doing well when clearly someone else wasn’t. You may feel some guilt if you find yourself explaining away their death with thoughts of what they might not have done to take care of themselves. And how about anger when you are again reminded about the unfairness of life? Let me say this: 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 the HIV that you are living with so successfully?
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 result in stress. Release them into the light of day.
Get support. Find a safe place to talk about how you feel. Even if the person who has died is not close to you, it’s still a loss in its own way. Sit down with someone who can listen without trying to tell you what you should do and talk it out. Saying it out loud can help you sort out your thoughts and feelings.
Accept that life is uncertain. Regardless of your circumstances. 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 HIV can give additional meaning to uncertainty.
Know that you can’t always know. It’s only human to have questions and want answers. Why did this happen? Were there complications? A related condition? Were the medications working? Were compliance and self-care on track? You may have answers to these questions. But you may not.
Review your foundation. Talk back to the fear factor by reminding yourself of your strengths: A physician you trust. Family and friends. Adherence with your treatment regimen. Following your self-care routine. Your spiritual connection. And whatever else you have put into place to keep yourself grounded when things feel shaky.
Have a talk with your doctor. Most likely, the news of a death can bring up concerns about your own 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. Another lesson that chronic conditions teach 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. Reach out 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 treatment plan underway, you stayed optimistic. Knowing someone with your condition 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. We can honor those who have passed on by making the best of each new day, another opportunity to be the best we can be in life.
The events of life remind us of just how precious life is. Work closely with your healthcare professionals. Stay on top of your treatment regimen. Get lots of support. And take good care of yourself. Always.
Gary McClain, PhD, is a therapist, patient advocate, and author in New York City, who specializes in working with individuals diagnosed with chronic and catastrophic medical conditions, their caregivers, and professionals. He maintains a website, www.JustGotDiagnosed.com.