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Jun15

Chatty CATIE: What is the one thing you wish you had known when you were first diagnosed with HIV?

Thursday, 15 June 2017 Author // CATIE - HIV and Hep C Info Resource Categories // Social Media, As Prevention , Treatment Guidelines -including when to start, General Health, Newly Diagnosed, Mental Health, Features and Interviews, Health, Treatment, Living with HIV, Media, Opinion Pieces, CATIE - HIV and Hep C Info Resource

And, what advice would you have for someone newly diagnosed? For CATIE, RonniLyn Pustil interviews two people living with HIV.

Chatty CATIE: What is the one thing you wish you had known when you were first diagnosed with HIV?

BRITTANY CAMERON, 31

Peterborough, Ontario

People living with HIV engagement worker, PARN

Diagnosed with HIV: 2006, at 36 weeks pregnant

I wish I had known that it would be OK. That I wasn’t the first HIV-positive woman to give birth, and I wouldn’t be the last. That HIV-positive women can and do have HIV-negative babies. That one day, advocating for women with HIV to have babies would become a passion of mine and I would inspire other positive women to have babies of their own.

I wish someone had identified the unique challenges I would face as a woman and mother living with HIV in a rural area, and had given me the tools to face them. I wish I had known that in my community I would one day be the tool to face them, the one to open doors for other folks.

I wish someone had prepared me for the stigma, oppression and marginalization we face as HIV-positive people. Not everyone accepted me. But the ones who don’t accept you were probably never worthy of your friendship anyways.

I wish I had known that HIV is no longer a death sentence.

I wish I had known that having HIV would drive a passion in me so strong that I would be inspired to build my leadership skills, be willing to share my status publicly and challenge oppression. Being diagnosed with HIV changed my life, but in a positive way, allowing me to feel alive again.

Before my diagnosis, I had no drive, no passion and no real goals or dreams. HIV gave me something to fight for, a sense of purpose, people to love, a community that welcomed me with open arms.

ADVICE:

Life goes on. One day you may look back and realize that having HIV changed your life for the better.

HIV doesn’t define you. You define you. You can have HIV and still have an amazing life.

Take the meds. As much as we dislike taking medications every day, they will help keep you alive.

Reach out. You deserve support. Nobody should live in silence and isolation.

Know that you are not alone. There are many positive people out there waiting to support you. Get connected and engaged. Engagement leads to community, and community can help give you a sense of purpose and keep you going.

Find your voice. Don’t be afraid to advocate for your needs.

Be gentle with yourself. You need to take care of you. Value yourself. Be your own best friend.

TYLER S. CUDDAHY

Burnaby, B.C.

Board member, Positive Living BC; peer support worker

Diagnosed with HIV: 2006

December 4, 2006, I remember it vividly. At 10:30 am I arrived at work, at YouthCO, and settled in before slowly walking over to the office of the support program worker, Brandy. We had arranged that she would accompany me to get my HIV test result that day.

We made our way to what was known as The Centre (the Bute Street Clinic). I was happy that Paul, one of the street nurses there who I had built a professional relationship with, was going to tell me my results.

At 11:15 am, I was in the room with Brandy and Paul, feeling very nervous and bouncing my right knee like I do in these kinds of situations. Paul turned to his computer and started punching in information. I tried to reassure myself, “I am going to pass this with flying colours.” But, really, I knew I was going to be positive.

Six months earlier, I had been in a relationship with a man who straight-up told me from the moment we met that he was HIV positive. I told him, “I volunteer with an HIV organization, so I’m OK. Thanks for being so honest with me.” One day I decided to be the bottom and that’s when I knew that I had become positive.

Before Paul could tell me my result, I saw the computer screen. I was ready to bolt. “You’re HIV positive,” he said in a way that didn’t make it seem so negative. I looked at Brandy—she was tearing up. I was supposed to be the one crying but I just sat there and said, “OK, let’s go now. Thank you for telling me.” I didn’t want to be in that room anymore.

I wish I had known then that it is possible to live well with HIV! That the key is to take my medications every day so I feel fine, and to have people around me who understand and respect me, without judging me because I have HIV.

When I told people I was HIV positive, a lot of my so-called friends turned against me. That really hurt. I wish I had realized that they weren’t my true friends in the first place.

Lucky for me, I was already hooked up with YouthCO, which offers HIV and hep C services to youth in BC. (At 18, I had become hep C positive and got involved in the mentorship program. Luckily, I was able to clear the virus without taking any hep C treament.)

Looking back at my life I feel like I’ve had a lot of negative things happen to me: hep C, then HIV… I am also someone who identifies as transgender, which comes with its own set of challenges.

But I am proud to deliver HIV services, to have been on the board of directors for YouthCO, the Hepatitis C Council of BC and Positive Living BC. And I volunteer with AIDS Vancouver Holiday Grocery because I get to be Miss Claus!

Advice: It’s not going to be the end of the world. Don’t think that your life is going to end, because it’s not. It’s not like it was back in the ’80s and early ’90s when people were dying. We’re more advanced in the way that we can take care of people living with HIV. Start taking HIV medication as soon as you can because it’s going to help you live longer.

These interviews by RonniLyn Pustil previously appeared at CATIE's Positive Side, here.

Une version française est disponible ici. 

About the Author

CATIE - HIV and Hep C Info Resource

CATIE - HIV and Hep C Info Resource

CATIE is Canada’s source for up-to-date, unbiased information about HIV and hepatitis C. We connect people living with HIV or hepatitis C, at-risk communities, healthcare providers and community organizations with the knowledge, resources and expertise to reduce transmission and improve quality of life. For more details, please visit www.catie.ca or call 1-800-263-1638.

CATIE est la source d’information à jour et impartiale sur le VIH et l’hépatite C au Canada. Notre but est de partager les connaissances, les ressources et l’expertise avec les personnes vivant avec le VIH ou l’hépatite C, les communautés à risque, les fournisseurs de soins de santé et les organismes communautaires afin de diminuer la transmission des virus et d’améliorer la qualité de vie. Pour plus de renseignements, veuillez consulter www.catie.ca ou appelez le 1.800.263.1638.


Decisions about particular medical treatments should always be made in consultation with a qualified medical practitioner knowledgeable about HIV-related illness and the treatments in question.  CATIE’s full disclaimer

Toute décision concernant un traitement médical particulier devrait toujours se prendre en consultation avec un professionnel ou une professionnelle de la santé qualifié(e) qui a une expérience des maladies liées au VIH et des traitements en question. Déni de responsabilité de CATIE 

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