I have PTSD. I process everything that happens in my life through a distorted lens of past trauma. It impacts my behavior, my emotions, and my ability to make sound decisions. It’s a big mental mess, but I’m working on it.

I didn’t know I had PTSD until a psychologist put a label on it. I thought PTSD was just for combat veterans and people who survived horrible things.

I always assumed that my horrible things were not horrible enough to give me a named disorder. On the outside, I moved normally through the world – a happy marriage, friends, a stable job, hobbies, travel. But, on the inside, I struggled with catastrophic thinking, anxiety, disabling fear, and intense negative reactions to routine stressors.

It all started the spring semester of my freshman year in college. I had attended a party at the off-campus house of a couple sorority sisters. I had danced and talked with a boy visiting from another college at the party, but he left with friends as things wound down. It was late and snowy outside so my sisters invited me to crash on the couch. Later, that boy returned through an unlocked basement door and sexually assaulted me on the couch where I slept.

I didn’t know his name. I didn’t know where he went to college – somewhere in New Jersey, maybe? I was deeply ashamed and didn’t tell anyone what happened. I spent the rest of the semester making bad decisions, skipping class, drinking too much, and doing battle with this unnamed pit of dread I felt in my gut.

The stress caused me to have a significant hair loss (telogen effluvium). Instead of attaching the hair loss to the stressful event, I somehow got it in my head that I had contracted HIV from the sexual assault. It was the early 1990s and AIDS was constantly in the news. They kept showing patients with bald, wispy heads, covered with sores.

When the semester ended, I went home to my family and continued to secretly struggle. I was good at it. No one noticed that anything was amiss. But when it came time for me to go back to college in the fall, I broke. I did not want to go back.

One evening, I spilled out to my parents that I had ‘unprotected sex’ that I didn’t want to have. I never said rape or assault. I told them I was terrified I had AIDS.

My parents tried their best to support me. They found a counselor through our church who talked to me about making smarter decisions and forgiveness. They took me to see an infectious disease specialist to test for HIV and other sexually transmitted infections.

All of the simple tests came back quickly and were all negative. The HIV test took longer, and when it came back, the result was EQUIVOCAL. What did that mean? Was that bad? Did I have AIDS?

The doctor said she believed there was a significant chance that I was HIV positive and it would just take longer for the a repeat Western Blot test to detect enough of the HIV antibodies to trigger a positive test. She suggested I go home for six weeks, and then return for a second round of tests – another Western Blot and a ELISA assay. I felt numb and detached.

I went home believing there was a 100% certainty I would have AIDS. I mentally revisited all the horribly sick, suffering people I’d seen on TV. I thought about how many people treated patients with hate and disgust. I read about families disowning their dying relatives and funeral homes refusing to bury victims. What was going to happen to me?

I suddenly felt like an untouchable person on a crash course with a horrible, ugly death. At least, this is what my 19 year old mind told me. The 90’s were a different time for AIDS. Treatments have changed, and it’s no longer the death sentence or stigma it once was. Back then, it really was a worst case scenario.

Six weeks later, I went back and retested. Everything was negative – the ELISA and the Western Blot. The doctor was certain I did NOT have an exposure to HIV. She smiled and told me to go out and live my life.

Just like that… it was over?

It may have ended for the doctor and my family, but it didn’t for me. That equivocal test gnawed at my peace of mind. I never really dealt with the assault itself. Being physically violated felt like a lesser trauma than the HIV testing-gone-wrong. For a few years after, I made regular visits to the health department for follow-up HIV testing. I didn’t fully trust that the negative tests were correct because that stupid equivocal result. I lost all trust in the healthcare system. I was always ready for the rug to be pulled out from under me.

I did go back to college, but I struggled with destructive behavior and social anxiety, Somehow, I always got by. I kept it together enough that I was able to blend in.

I graduated a few years later, met my husband, got married, bought a house and generally lived a contented life.

The first way the PTSD really manifested was that I stopped being able to go to doctors. From age 21 until I was in my 30s, I did not go to any doctor. No physicals, no routine ob-gyn – not even when I was sick. I was too afraid that they would find something terribly wrong with me, so it made sense to just avoid it altogether.

In my mid-30s, I had a weird bout of crippling vertigo and had to see a couple doctors in order to get to the bottom of things. It was nothing serious in the end, but seeking medical care felt like going to the executioner. I had panic attacks, intense feelings of fear, and massive distrust.

For years after that, I just white-knuckled my way through healthcare. I wanted to be healthy, so I did all the routine stuff I had to do, but it was always with tears, heart palpitations, and a dose of Xanax for courage.

But when I turned 50, my doctor recommended I get a routine screening colonoscopy. I thought OK – I can grit my way through this one, too.

But at my pre-screen appointment, I lost my mind! When the nurse practitioner described the process, I detached from reality and found myself flashing back to the actual sexual assault. I hadn’t thought about that for decades. But suddenly, the idea of being naked, unconscious, and in a room full of strangers putting equipment into my body… nope, nope, nope! I barely remember the day, but I vaguely recall spilling my entire story out and telling them I didn’t know if I could get through it.

I ended up going into the procedure with a sexual assault advocate holding my hand and a whole crew of very gentle nurses talking me quietly through each step.

In the end, I was able to get through the procedure. There were lots of tears, chattering teeth, and panic attacks – but it was done and it was fine.

That was kind of the last straw for me. I knew I had to get help because I couldn’t live my life with regular healthcare being such an intense trigger.

Then the very next year, I developed my mystery disease. I started having to see so many doctors all that I became a bit numb to all the routine needle sticks and diagnostic tests. I was just desperate to find an answer – until HIV came up again.

When you have mouth and genital sores, AIDS is one of the things they consider as a possibility. In fact, they consider sexually transmitted infections before autoimmune diseases ever come up. I’m not in an at-risk demographic for sexually transmitted infections, but they had to rule it out.

So there I was again – facing my old nemesis (along with tests for syphilis, herpes, and hepatitis.) Things got ROUGH for me! I was so scared every day that I stopped thinking life was worth living. I wanted to exit more than I wanted answers. Eventually, I consented to have all the tests run, and they all came back negative.

With the encouragement of my family, I found a therapist and we started unpacking my complex past. She told me I had been living with PTSD for thirty years, and with the addition of my new illness I was really working with an ongoing case of complex PTSD. Without a diagnosis of the medical mystery, my trauma was still unfolding and evolving.

I still have a lot of work to do, but I’m doing better. I’m retraining my brain to not always go the route of catastrophe. I’m finding it easier to relax at my doctor’s appointments, and let the process happen. I’m finding some healthcare providers that I trust.

I think the trauma is something that will always be part of me. But maybe it doesn’t have to be so crippling.

I’ll always wonder if my past played some role in me developing my autoimmune medical mystery. I don’t think our human bodies are meant to endure that much stress. I think there are physical consequences to being in survival mode too long. I wish I’d found help earlier, but at least I’m there now.