Positive Living: Finding surprising support

I did something recently I swore I would never do. I joined an HIV support group.

My reason for not ever seeking out a support group for the disease I’ve lived with for nearly 23 years was not exactly a noble one. What I was afraid would happen was that there would be a bunch of “newbies” who might be as much of an emotional mess as I was when I was newly diagnosed. I have to regularly deal with some whacked out newcomers in AA and I just didn’t think I wanted to go through that with HIV.

But this group, sponsored by AIDS Service Association Pinellas (ASAP) completely surprised me with its makeup. I could never have predicted its value, either.

I have to admit the members of the group have completely changed the face of HIV for me—both in who they are and the remarkable wisdom and experience that they bring to the table.

First, the group is led by perhaps the first-ever straight white man who has AIDS that I’ve known. The surprises just keep coming too. Other group members include a young, straight woman with teenage daughters, a recovering IV drug user, a smattering of gay men of all ages, types and colors and the first HIV-patient in Florida to receive a liver transplant.

The person with the least amount of time dealing with HIV is two years. Most of us are in the 20-plus years category.

I won’t say how these fellow group members contracted HIV. And I’ve learned over the years that when someone learns you are positive, they immediately ask, “How did you get it?”

If it’s contracted through sex, you’re labeled a whore. If it’s through IV drug use, that person is immediately called an addict.

The bottom line is its nobody’s business how you got it. Does it really matter? A word of advice…don’t ask that question. It’s rude and inappropriate, especially if its directed at someone you really care about.

Since many in the group have lived with HIV for a long time, the topic of AIDS Survivor Syndrome has come up. This condition manifests in aimlessness, depression, broken relationships, substance abuse, high-risk behavior and, at its most extreme, suicide.

Knowing the signs are important. They range from personality changes, flashes of anger, anxiety, insomnia, sexual risk-taking, withdrawal and isolation and elements of post-traumatic stress.

It often takes years for these signs to manifest—long after life for those around survivors has returned to normal.

Most of us in the group have experienced one or all of these symptoms since we were diagnosed. It’s interesting that more focus from AIDS professionals seems to be with the ramifications of us living longer and healthier lives than in years past. The meds that keep us alive are remarkable—nothing less than a miracle for those of us who were given a terminal diagnosis.

The question for us now is, how do we process a miracle when our entire lives had become an acceptance of our impending death? From my own personal view, that really screwed with my head. This group has made me feel a lot less alone in that experience.

Despite the of the outcome of the last election, it is apparent many in our group have already made a decision about medical marijuana.

Many of us use it regularly to deal with a host of both physical and medical conditions. We’ve discussed what a blessing it is that most of our health and mental care provides know we use it and are supportive of it. I even had a nurse advise me to microwave my stash before use because it could contain mold or fungus that could be dangerous to someone with a compromised immune system.

These issues would go away with a regulated system of dispensaries like so many other states have. Please remember that when this issue inevitably comes to the ballot box again.

Most of all, this wonderful group has provided a lot of people like me a safe and overdue place where we can share our own experiences with others who have had them. There is a kindred-ship here at a level I have not experienced anywhere else, including with some of my most trusted friends and spiritual advisers.

We talk about the drugs we’re on, their side effects and how to stay compliant with taking them. We discuss our health care professionals, how we handle disclosure issues, mental health problems and dealing with our families. We have also been blessed with some great guest speakers. We especially enjoy it when a drug rep speaks because that typically includes lunch.

If you have HIV, regardless of when you were diagnosed, taking a part in a group like this can make you feel a lot less alone in your day to day struggles to survive with the disease. In fact, it can help you thrive with it.

My life is better because I finally put aside my prejudices and joined together with others who understand me the most.