A woman with long hair and brown eyes.

I Had to Get Past the Stigma of Having HIV

Then I Had to Do the Same for Mental Illness.

By Mariah Wilberg

I was 19 years old and pregnant when I received my HIV diagnosis in 2006.

“This is punishment,†I thought, just rewards for the survival sex I turned to on the streets of Minneapolis as a homeless, runaway teen. I already felt unlovable because of my history of sex work. Now it felt like the love I had to give would be literally poisoned.

My abusive partner, who tested HIV negative, reinforced these fears. He said I was lucky to have him. Without him, I’d still be on the streets selling my body, he said. And nobody else wanted a dirty, diseased bitch.

When he went to prison, I fell apart. I had no support system. I relapsed almost immediately, and I wasn’t being the mother I wanted to be for my newborn daughter.

I stopped taking my HIV meds. It was so easy to take them when pregnant to keep her from being born with HIV, but then so hard to take them just for myself. Besides, the other drugs I was taking — cocaine and ecstasy — made me feel good. Unlike the HIV medications, which were a constant reminder of my unworthiness.

When my daughter was 8 months old, they arrested me for selling drugs. Out on bond, I impulsively fled from Minnesota to Texas. My daughter was safe at my parents’ house, and I figured, “I already have a death sentence, so I’ll be damned if I spend my last years, the rest of my life, in prison.â€

After I missed court, my parental rights were terminated and a felony warrant was issued for my arrest.

I buried my HIV deep and locked it away, telling no one. The one time I re-engaged with HIV care while on the run, a roommate discovered my pills and told our mutual friends and my then partner. I convinced them she was lying to hurt me — and in the garbage went the HIV meds.

After four years as a fugitive, I was on my way home to visit my family for the holidays. I had just told my daughter I would see her in the morning over the phone; I was never to see her again, as of yet.

We were pulled over after that phone call, and I spent the holidays in jail, instead of with family. I was sent to prison shortly after.

There, I received an AIDS diagnosis. I was 25 years old. I could no longer afford the luxury of denial; it was killing me. In group therapy, I told my secret to a group of women I had come to know and love.

I saw no fear, no disgust. “It could have been me,†they said. “Thank you for sharing, I now think differently about HIV because of you.â€

My life suddenly made sense. I had the power to transform my pain into purpose. “I’ve made it this far so that I can help others,†I thought. In prison, I began to learn how to love myself. All of me.

When I left prison in 2013, I knew I was done with closets. I settled down in St. Paul and was quickly embraced by Minnesota’s HIV community — my community. I became a volunteer HIV educator, which quickly turned into a paid position. Learning that my undetectable viral load meant I was unable to transmit HIV through sex was the final blow to my internalized stigma. I could love without fear! I started dating, this time, sharing my status.

I was relieved to find that most people were receptive after learning more about HIV. However, it didn’t all go smoothly. After disclosing my status to a potential partner, I noticed some red flags and stopped talking to him. In retaliation, he put my picture, name, and HIV status on social media. It was my community that kept me safe, holding me tight as I received death threats from strangers online.

That was the worst-case scenario I always feared, but I was strangely relieved. Because I realized then that the fears were far worse than the reality.

Months later, I met my husband. He chose science over stigma, and we recently celebrated our sixth anniversary. I wanted to make sure all people living with HIV knew the truth about their bodies. So I incorporated the most recent science about treatment as prevention into the presentations I did as an educator and prevention worker.

Later, as a communications specialist for the state of Minnesota, I led us to be the third state to sign on to the undetectable equals untransmittable (U=U) campaign. I also coordinated a U=U transit campaign with millions of views. Since 2019, I’ve been leading the implementation of END HIV MN for the state. Not only am I done with HIV stigma in my own life, but I am also privileged to work alongside my community on statewide efforts to reduce stigma for everyone.

This is my dream job! It’s the reason I sacrificed, spending seven years of full-time school on top of full-time work to earn a bachelor’s and master’s degree.

Yet as work-from-home dragged into the fall of 2020 because of the COVID pandemic, my dream job started to feel more like a nightmare.

I was wracked by guilt as the pandemic upended much of my work. Projects were moving slowly or put on hold as staff reassignments and a hiring freeze turned my coordinator position — designed to lead project teams across departments — into a one-person show.

I felt like a constant failure, like I was letting my community down. I was isolating myself, scared to leave the house, uninterested in video calls with family or friends. I didn’t think I was depressed. I told myself, “I can still get out of bed. I’m still going to work. I’m not sad, I’m just overwhelmed. Everything is just so hard.†I was drinking more and more, mostly to escape the feelings of failure and get some sleep.

Then I suddenly developed an aversion to alcohol and quit drinking around the new year. I’ve done that before in the past, cycled through times of heavy drinking and total abstinence. I was overdoing it anyways, so I didn’t give it much thought. Besides, my husband and I are saving up for in vitro fertilization, so stopping was a good thing.

Sleep was elusive without the alcohol. My thoughts would race, magnifying my every fear. It might start with, “Should I have worded that email a little differently?†It always ended with, “You are failing, everyone secretly hates you, and you’re terrible at your job.â€

Objectively, I knew that wasn’t true. I was even participating in the Emerging Leaders Institute for the State of Minnesota. But logic was no match for these feelings.

Then came the panic attacks. I usually have maybe one a year — now I was having one every few days. My heart was racing, sometimes resting at over 120 beats a minute. I couldn’t understand why my anxiety, usually limited to overthinking, was now showing up in my body.

I was worried about money. My husband lost his day job during the pandemic. Ever since, he’s working around the clock to grow his own automotive detailing business from part time to full time.

Even though I knew winter is a slow season for detailing, I became suspicious of the fact that he wasn’t pitching in as much financially.

And then, Aha! Suddenly, it all made sense. The panic attacks, the insomnia, the racing heart — “It’s my body telling me something,†I decided. “I know what it is now. My husband is hiding something.â€

I became fixated. I was investigating him, looking for evidence to back up my fears. I found none, but that didn’t dissuade me. My brain wove snippets of phone calls and meaningless events into an intricate story of a double life. I thought he was using our home security cameras to listen in and spy on me, to monitor whether I had learned his secrets.

 

I finally confronted him. He was adamant and believable in his denials. And a month prior, we were excitedly discussing the types of parents we’d be together. But I still had a gut feeling that something was wrong. Very wrong. I was so confused.

It felt like he was speaking to me in subliminal messages, trying to hurt me. I spent hours researching gaslighting, trying to understand why I was doubting my own perceptions. When he spoke to me, I sensed an underlying malice, hidden meanings. I finally told him that I wanted a divorce.

He stayed on the couch, where he had already been sleeping for days. I went upstairs to our bedroom and saw the smoke detector on the dresser, from months before when I watched him take it off the wall because it was chirping.

Only this time, I wondered if he was planning to set the house on fire and kill me for insurance money.

That’s when I knew something was very wrong — with me. My husband wasn’t gaslighting me; my own brain was. I realized I hadn’t eaten in days and had barely been sleeping. But I was neither tired nor hungry.

I asked my husband to take me to the ER. When I got there, my heart rate was over 180 beats a minute, and I had an immediate EKG test. Even as he held my hand tightly, I was flipping back and forth between understanding I was having a medical issue and fearing that he was orchestrating this, to get me admitted and out of the way.

Those thoughts only stopped after a medication to rebalance my neurotransmitters dissolved under my tongue.

As I calmed down, they told me I was experiencing mania. The fear and confusion, paranoia, altered perceptions and false beliefs were symptoms of psychosis. The doctors said that had I wandered in alone in the state I was in, I would have surely been admitted. But since I had a support person with me, I should continue taking the medication they had just given me and follow up next week.

As we finally got home after a very long night, I Googled my new meds. Zyprexa (olanzapine), an antipsychotic. I noticed a visceral reaction in my gut. I’ve been here before, confronting stigma in a pill bottle.

A little over a month later, I am still confirming the suspected diagnosis of bipolar disorder, with a full neuro-psychiatric test scheduled later this spring. My new provider strongly suspects that I am living with attention deficit disorder as well.

I am not afraid of these new labels; rather, I am empowered with this new lens. It puts so much of my life in perspective: running away from home, the homelessness, the sex work, my HIV diagnosis, my incarceration, my relationship with drugs and alcohol, my yo-yoing body weight.

Did I only gain 15 pounds during pregnancy from the HIV meds alone, or was I manic also? After my baby was born, was I really just a bad mom, or was it more likely that I had experienced postpartum depression?

Looking back, I have more empathy for my younger self. I don’t believe in regrets — I am exactly where I’m supposed to be in life. But I do wonder if my child would be with me now, as I so desperately want, had I been diagnosed at a younger age.

I now see how my internalized stigma of mental illness prevented that earlier diagnosis. I channeled all my symptoms into two socially acceptable categories: I am anxious, or I am overwhelmed.

Once I recognized the stigma, I was set free. I have no desire to climb into a closet. Instead, I immediately knew that I would — I must — be open and transparent about this part of my journey. I know that our stories triumph over stigma. HIV taught me that.

I hear the stigma informing my friend’s gentle questions. “Are you sure you want to be open about this?†“Don’t you want to take some time and think about it?†and “As long as being open doesn’t hurt other areas of wellness — like employment.â€

They are not trying to silence me — they are my friends. But they worry about what I’m up against.

Unstable. Dangerous. Crazy. These are some of the many labels that society assigns to people living with mental illnesses or differences, people who aren’t neurotypical.

But these do not describe me, not at all. I will not participate in stigmatizing myself. Just as I learned to reject labels like “dirty†or “diseased,†I reject these labels, and the idea that I should keep this a secret.

I love myself and my brain. The same gifts that have allowed me to build a life and career I am proud of are the same things that got dialed up too high during my episode. I wouldn’t trade my brain for anything. I believe it is different, but not ill.

Others in my life reacted warily to my suspected diagnosis and new mental health meds. “You probably don’t need to take them forever,†they said. “Aren’t you worried your personality will change?†“You’re probably not actually bipolar.â€

But so far, my new medication, the antipsychotic, makes me feel great. It hasn’t changed my personality or dampened my gifts. Rather, I feel like the best version of myself.

Gone are the racing thoughts torturing me into the night. I am sleeping well, and I have no panic, no racing heart. I trust my husband again, even when he’s working late. Since starting them, I feel even-keeled, more optimistic, more motivated, and I am happier than I have been in a long time.

For now, I’m sticking to prescribed medications and nonalcoholic beverages. I’m getting out of my own way and giving the doctors a chance to diagnose and treat the conditions that I’ve obviously been self-medicating my whole life.

I see how my trauma history is negatively impacting my relationship with my loving and incredibly patient husband. So I’ve also started EMDR therapy, which helps reduce the impact of trauma on your life.

I will accept whatever diagnosis aligns most closely with my symptoms, while also understanding that human diversity is rich, the line between “normal†and “ill†is subjective, and we don’t fit neatly into check boxes or categories.

This pandemic and isolation are hard for us all. Please, seek help if you need it. Don’t let stigma stand in your way.

Mariah Wilberg utilizes her lived experience with HIV, trauma, homelessness, survival sex, substance use, mental illness, and incarceration to inform an award-winning career in public service that spans from public health to justice reform. This column is a project of TheBody, Plus, Positively Aware, POZ and Q Syndicate, the LGBTQ+ wire service. Visit their websites – http://thebody.com, http://hivplusmag.com, http://positivelyaware.com and http://poz.com – for the latest updates on HIV/AIDS.

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