‘I was diagnosed with HIV at 18 and turned stigma into activism’
Michael O’Dea on overcoming personal struggles, educating his loved ones and pioneering initiatives to tackle HIV discrimination. By Aoife Rooney
Michael O’Dea came out as gay in 2015 — the year of the same-sex marriage referendum in Ireland. O’Dea, who is a national programme coordinator for sexual violence charity Menaswell in Amsterdam, is from Kildare, and says that their parents swiftly accepted it. The only caveat? “Don’t come home with HIV”.
“From there, sex always had a connotation of acquiring HIV, and it was reinforced by the fact that I knew very little about it,” they say.
The fear of acquiring HIV was constant for O’Dea, who became sexually active in their late teens, and was compounded by the fact that they lived rurally. Growing up Gen Z, O’Dea was a self-described “child of Grindr”.
The now 25-year-old was seroconverting (the transition from infection with the HIV virus to the detectable presence of antibodies in the blood) for three weeks in the run-up to their Leaving Certificate.
They went on a group holiday when the exams were over. On their return, they went to the doctor for a routine STI test.
O’Dea’s doctor, Fiona Mulcahy, who set up the Guide clinic in St James’s Hospital, explained that their test came back reactive for HIV, and that she had a strong suspicion that they had
HIV. O’Dea explains: “I instantly got a really hot feeling in my face of panic and totally shut down. I just about managed to get out the words ‘I’m too young to have HIV’.
“I had turned 18 three months before this. I also had this connotation with HIV and older, gay men, and that it was quite unrealistic that someone like me would get it.
“There was all of this dormant HIV stigma that we pick up through things like media and other conversations. It lit a flame of stigma in my mind and started spreading everywhere.
“I had a complex relationship with my parents, so when I found this out my first thought was ‘I can’t tell anyone about this’.
“I was unsure if they were going to kick me out of the house. I had to go home and watch TV with my family like nothing was going on, but I had this immense weight on my stomach, just a constant sinking feeling.
“I was so deeply ashamed of myself, because it confirmed a thought I had about sex, which was that if you are slutty or promiscuous, you will ultimately get punished for it.
“In that moment, I thought that this was the most appropriate punishment for me. Words like ‘slut’ and ‘whore’ were really ingrained in my mind at that time.
“I thought that the social ramifications of living with HIV would affect my life forever. I thought that it was going to be very difficult for me to have relationships with people going forward. I really felt like broken goods. Who would want damaged goods as a boyfriend? Will I ever have kids, ever be able to get a house?
“At the time, you couldn’t get life assurance if you were HIV-positive in Ireland. All of these thoughts came flooding into my head as an 18-year-old only one month out of school.
“My childhood just ended in a day. You see yourself as invincible as a young person, and in that moment I understood that all the bad things in the world can happen to you. My innocence really left me that day.”
In the following weeks, O’Dea had to make excuses to get to Dublin for multiple hospital appointments, something which they say was difficult with strict parents. O’Dea was put on HIV medication after a few months.
“At one of my appointments, my doctor told me that I would never have unprotected sex again. That shattered me, because there’s so much that condoms mean in the gay community beyond just preventative methods. They represent such a symbol of morality and intimacy and relationships. I remember turning to her, joking, asking ‘Even blowjobs?’ to which she very seriously said yes.”
It was around this time that the message U=U — undetectable equals untransmittable — began to gain ground. A landmark study found that effective HIV treatment and an undetectable viral load means that the risk of HIV being passed on through sex is zero.
“Six months later, I was brought back in and was told that I could not transmit HIV anymore. Suddenly, I had the most treatable chronic illness in the world. I take one pill a day, get my bloods done twice a year, and that’s it.”
O’Dea told their parents a year after their diagnosis, after being unable to cope with the mental toll of hiding their status.
“I couldn’t cope with the anxiety of keeping it a secret. I was visibly unwell from my poor mental health as a result of having to keep it a secret. I had horrendous depression and considered suicide at times.
“It was all so wrapped up in the stigma of having HIV that I thought it would be easier to kill myself than tell other people.
“This is not news that any parent wants to hear. My parents’ reference point for HIV was either a picture of an emaciated body in that hospital bed from the 80s and 90s, or Freddie Mercury. I don’t place any blame on them, but they had the same stigma as I did, and there was a sense that I had acquired HIV because I wasn’t careful, and that it was ultimately my fault. It was agreed that we weren’t to tell anyone for fear that it would come back to my parents. That really reinforced that stigma of having to deal with it on my own.”
Knowing that their parents were aware of the situation, O’Dea, who at the time was pursuing a degree in psychology, began to cope better with their diagnosis.
“I started to see that this was all bulls***. It is not my fault that a virus exists in this world and that by chance, I have acquired it.
“I started to deconstruct in my mind that what I had placed upon myself in terms of HIV stigma was totally unnecessary and entirely fuelled by stigma and ignorance, and that’s what motivated me towards wanting to get involved in community activism.”
O’Dea got involved with ACT UP in their Dublin branch at a time when Ireland was in a HIV crisis, with the third-highest rates in western Europe.
PrEP — a medication taken by HIV-negative people to reduce their chance of getting the infection from having sex — was also not available at the time. Seeing activists like Robbie Lawlor speaking so openly about living with HIV propelled them forward to be more open about their own status.
O’Dea worked with ACT UP to create a peer-support programme, which grew, and at 20, they developed a proposal and gained funding for a peer-support service that is still providing guidance to those living with HIV.
“Seeing that I was able to do that really pushed me forward.”
O’Dea was asked to go on the radio for World Aids Day, which brought the conversation back to going public with their HIV status.
“My parents couldn’t cope with the idea of me coming out publicly with my HIV status because they feared the ramifications it would have on my life — my employment, my social relationships with people. It took a really long time for my mam to realise that U=U, and that I could live a long and healthy life.”
“The diagnosis does not just affect the individual, but the family too. I realised that I made
‘I really felt like broken goods. Who would want damaged goods as a boyfriend?’
all this progress personally, but had not brought my parents along with me. I was able to tell them about all of the work I had been doing, coaching them and include them in the conversation.
“My parents are the people that inspire me the most, because if they can go from having all of that stigma to where they are now, anyone can. I have opened up their perspective so much more to how diverse the world can be.
“So many queer people live their lives wanting to get that acceptance from their parents. To hear not only was I accepted, but valued for who I am, was the final stamp of approval to know that I have their support. It is what every queer person dreams of.”
Since then, O’Dea has forged ahead with activism. They have spoken at Dublin Pride, received the gay and lesbian award on behalf of ACT UP Dublin, completed a Master’s in health and medical psychology.
The video of O’Dea coming out publicly on World Aids Day got 15,000 views the day it was uploaded.
They then started speaking at colleges, and worked on their contribution to HIV stigma in healthcare settings. O’Dea went on to work for the Terrence Higgins Trust as a national chemsex service coordinator, where they ran a HIV programme and a stigma-empowerment programme.
“Some of the more negative reactions people tend to get are in healthcare settings,” adds O’Dea. “I once went to the doctor for tonsillitis, and the doctor prescribed me medication to treat it, but when I told her about my HIV status, the conversation changed entirely. She asked me how that happened, which is the stupidest question ever. She also told me that I must be one of the youngest people in Ireland living with HIV. She also recommended an STI test. I was in shock. So much of the stigma around the virus is internalised, so when you hear this, it reinforces it.”
O’Dea received funding to develop a module on HIV stigma for healthcare professionals and students in Ireland. RISE (Redefining Institutional Stigma Education), in collaboration with RCSI, launched in June, and aims to help address the challenges created by stigma in a healthcare setting.
O’Dea says: “I didn’t think I’d have my parents in my life. I am so lucky that my parents came round to having a great understanding. People do change. The story I want to hammer home is that you can live a positive and beautiful life, openly, with HIV, and it will not have a negative consequence on your life.”
For more information, the module can be viewed at riseproject.thinkific.com