Hıv, İdentitiy, Katie Willingham

Hıv, İdentitiy

How HIV Affected My Identity

A woman with HIV talks about how her diagnosis affected her identity.

6/16/2021 11:30:00 PM

'Undetectable equals untransmittable is a scientific fact, proven by five multinational cohort research studies. This powerful knowledge changed everything about how I felt about myself. I no longer felt like a bottle of poison, a danger to everyone.'


Katie WillinghamJune 14, 2021Does your medical condition cause people to see you differently than before? More importantly, does it cause you to see yourself differently?We might not think about self-identity enough to add it to our medical checklist, but our identity -- how we view ourselves, how we feel about ourselves -- is a critical part of our well-being.

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Sometimes we feel labeled by our health. Sometimes we feel isolated or set apart from “healthy society” -- we become part of a demographic defined by our condition. This is especially true for people who live withHIV. Being diagnosed with HIV changed my life instantly; being given 1 to 5 years to live has that effect on you. Oh, don't worry, that was 21 years ago and HIV medications have come a long way since then. But back then I was dying, and that tends to change how people see you.

HIV also carries a stigma that often changes how we see ourselves. Some people fear you're contagious, or they may judge your character for contracting a sexually transmitted disease. And just knowing that the stigma exists is often enough to cause us to stigmatize ourselves, changing everything from our self-confidence and sense of self-worth to our very core identity.

I was a respected person in my work, in my church, and in my community before my diagnosis, but afterward people I had known for years avoided me, feared me, even disavowed me.I felt rejected by the world I once knew and loved, completely detached from the person I once felt myself to be. This evolution of identity affects every relationship, however great or small.

I feared playing with my children or cooking for my family lest I should bleed; I feared having sex with a partner or even going to the hospital to be examined or poked with needles. I felt like a bottle of poison.Then there's the complication of navigating intimate relationships with a sexually transmitted disease. Just imagine how to have that conversation without running potential partners away. You begin to feel unwanted, undesirable, even repulsive, a pariah forever marked by three scarlet letters, and you wonder if you'll ever be loved again.

Yes, HIV affects how you see yourself, and this often affects our emotional and mental health as well. After my diagnosis, I struggled with severe depression. I felt unwanted and lonely, worthless, and unlovable. To be honest, I've spent time in contemplation, wondering if I'm strong enough to continue living a life with HIV, in part because the stigma of HIV just seemed so formidable -- and inescapable.

Then I learned something that would change my life all over again, and that something was U equals U. It stands for “undetectable equals untransmittable,” and it means that if you adhere to your HIV medications and attain anundetectable viral load(meaning there isn’t enough virus to be counted in blood tests), then you can NOT transmit HIV sexually to anyone.

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Just as three little letters (HIV) took my humanity and sense of self-worth from my life for a while, discovering that it's impossible for me to transmit the virus to anyone as long as I stay on my meds gave me my life and dignity back. No longer do I identify as someone who is dying, or a threat to others; I am a woman living with a manageable chronic medical condition.

Diabetes is a manageable chronic condition; so are asthma, COPD, and high blood pressure. No one is afraid of you when you live with one of these conditions because we know they aren’t a threat. They're not contagious and they're treatable with medications. All of this is now true about HIV as well -- once you’re diagnosed and sticking to your treatment, so why is it still so stigmatized?

Living with HIV is a journey -- the evolution of our self-identity. Many of us who live with HIV deal with the loss of parts of our lives that help define who we are. Employment, family, social standing, even dating eligibility all play a role.But this particular part of our overall health isn't actually in our hands, nor can doctors have much effect. That’s because the negative stigma that affects my health and has the power to influence my self-identity and self-esteem can only be changed by

you.To be sure, you can't change how the world sees me -- only time and education will do that -- but you can educate yourself about the truth concerning the modern realities of HIV and change how YOU see me. That's a start; that's all I can ask.

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