Long Term Survivor and AIDS Survivor Syndrome

My name is Mike. My story is a little different, but like so many that I have read, there are common elements. What I have written about my HIV experience is pretty much a "just the facts" telling. My struggles with AIDS Survivor Syndrome are the focus of this.

A positive HIV test in 1987

I received a positive HIV test result in the spring of 1987, back when the virus was sometimes called HTLV-3. My best guess is that I was infected in early 1985, during a period when I was injecting drugs and participating in unsafe BDSM play.

I learned a few years later that I also had Hepatitis C, probably from the same period.

A supportive relationship

A lot happened between the time I was likely infected and getting the test result. A co-worker who had become a close friend tried to intervene with my drug usage. I was fired from my job, which I believe actually helped me to wake up to what I had been doing to myself. I quit drinking alcohol. I moved in with my now former co-worker.

About a year after I was fired, I found a new job in a new profession. I was well educated, employed, living with a wonderful woman. We had been taking precautions. We decided that I should be tested for HIV. The result of the test undid a lot of plans, but we stayed together. Our relationship changed slowly into a platonic, supportive one. We both had our challenges and we helped each other through them. We still do.

Dealing with my addiction

My doctor was an addiction specialist. He had other HIV+ patients. He told me that my life expectancy was not long, maybe 2-4 years based on assumed infection date. I focused on my work and read everything I could about AIDS research. I saw a sliver of hope that I could survive until treatments were available. Meanwhile, some of my drug using friends were getting very sick and dying of AIDS.

My doctor got me on AZT when it became available and later transferred me to an infectious disease specialist. The specialist added CTC when it became available and later a 3rd drug. The schedule of taking the meds was challenging, especially the mid-day ones. I developed kidney stones as a side effect from one drug, but generally tolerated them well. The drug plan from work paid for them all.

I began to struggle to cope

In 1994, my employer decided to outsource my department and the company it was going to did not have good benefits. I found another employer that had better benefits, but landed in a high stress environment that I was not really qualified for.

I developed shingles

In late 1995, I stopped taking my HIV meds. I did not have an actual reason for this. I just didn't fill a renewal.
A couple of months later, I developed shingles. I told the specialist that I had stopped taking my meds. He told me that the virus would have a tolerance for what I had been on and got me started on a new drug combination.

My life stabilized with a new drug combination

A couple of years later, I returned to my previous employer and my life settled down. Or so I thought. My partner and I had been volunteering in animal welfare. I thrived on it as well as the challenges of my work, and pushed HIV into the back of my mind. I was good at ignoring minor side effects from meds and occasional infections that people without compromised immune systems might just shake off.

Things take a turn

In 2004, I went off my meds again, this time for a longer period, and I got very sick. I lost a lot of weight and developed fungal infections. I ended up in hospital. My CD4 count had dropped to 55. At no point did I feel that I was suicidal, but I was killing myself.

I told my doctor that I was off my meds again. My doctor decided that it would be best to transfer me to a larger clinic in another hospital.

Trying therapy to address my drug holidays

My new doctor told me that had seen patients take "drug holidays" before.

He mentioned that the clinic had a staff psychologist and strongly recommended that I seek some therapy. He and a pharmacist reviewed the various meds that I had been on when I stopped them and all of the others that I had taken, and came up with another combination of much newer drugs. I started therapy, but I wasn't a good patient. I avoided difficult issues, but stuck it out for a while and got some better understanding of myself and my motivations.

Long-Term Survivors face aging with HIV

In 2012, shortly after I turned 60, I had a long talk with my doctor. He told me that I was far more likely to die of lung cancer than of AIDS. I had never quit smoking because deep down I was still expecting to die young. My doctor asked me about retirement plans. I had a company pension but no other savings, because I never expected to live to retirement age.

That conversation had a lot of impact on me. I reconnected with the addiction specialist who I had seen 30 years prior and he gave me a lot of advice that helped me quit smoking. I also started thinking about retiring.
In 2014, I was treated for Hepatitis C and cured. I have tested negative since then and my liver has healed a little.

Over the past 12 years, I took up outdoor activities that I had dropped many years earlier and started doing things other than work, paid or volunteer. I retired at 69. I am 72 as of this writing. I still have a passion for animal welfare and continue to volunteer, but I have never had any interest in returning to paid work.

Facing AIDS Survivor Syndrome

The psychologist to whom I was referred in 2004, told me about something called "post-AIDS survivor syndrome", specifically about non-compliance with HIV meds, which I had been through twice. He focused on coping mechanisms and ways to remember to take the meds. I did not spend a lot of time on root causes.

Much later, I told a friend about my experiences and he told that I should try to find out what caused my stopping meds, because as well as I was doing, it could happen again. I stumbled upon writings by Tez Anderson about AIDS Survivor Syndrome (ASS). I looked over the list of symptoms, and I had experienced many of them over the years:

My symptoms of AIDS Survivor Syndrome

• Survivor's Guilt (of the pack that I ran with in the early 80's, I am the only survivor. The rest died of AIDS or drug overdoses, some of which were suicides. Many of my other gay and bisexual friends also died of AIDS.
• Lack of Future Orientation, which I have described above
• Panic from Unexpected Older Age
• Emotional Numbness
• Irritability
• Treatment Fatigue

My partner would probably add a few to that list, particularly Anger.

Before new HIV treatments, I was prepared for death

Before the development of drugs that changed AIDS from a death sentence to a manageable disease, I had come to terms with my own death. I wasn’t planning for the future, but didn’t fear it either.

Adjusting to a new reality was a struggle for me.

So, did I find out why I had gone off my meds twice in the past? Not really. There was no single root cause. I did learn that a lot of people who have AIDS Survivor Syndrome have done the same thing. It’s called treatment fatigue.

Injectable treatment may address treatment fatigue

The development of the new injectable meds, which are taken far less frequently, are partly a response to this.

I think of treatment fatigue as fatigue from accumulated traumas. Healing from those traumas can prevent it.

I have made a lot of progress, especially in the past 12 years. I believe that I have healed from a lot of trauma. I also know that I still have a ways to go. Which brings me to the last part of my story.

U=U and what it means to me

I have been living a celibate life for most of my HIV+ years.

Partly because of my periods of discontinuing treatment, it took a long time for the newest drugs to get me to the point where my virus is Undetectable. So, it should also be Untransmissible.

However, after so many years of celibacy, initially triggered by a fear of giving my virus to someone else, I am still not ready to become sexually active again. That’s not to say that I don’t have non-traditional, non-sexual outlets, but that is a whole other subject.

Plus, I have added ED to my list of challenges as I aged.

Who I am today

Overall, I am very content with the life that I have and am actually finally happy most of the time.

Not quite thriving, as some would say, but it's getting better all the time.

I found the experience of writing my personal story to be difficult, as it forced me to revisit old traumas. It was therapeutic as well. I hope readers will learn from it and maybe benefit.