“I had to cross a threshold to ask if he was okay with that.” Celicia (34) points to the kitchen, where her husband is preparing food for their three-year-old daughter. Because while Celicia is open about her HIV status, her husband is not. He keeps it a secret, convinced that the level of tolerance for HIV patients is extremely low in the industry he works in. The secrecy doesn’t just apply to colleagues; Close friends and immediate family members are also unaware. “I respect that and we discussed it well in advance.”
The couple live in a spacious apartment in South Holland with their daughter and Celicia’s son from a previous marriage. A year ago, a new housemate arrived: a huge Dane the size of a calf named Poes. On the wall is an enlarged photo of their wedding day, with the couple sitting in a bumper car in full bridal regalia. “We wanted an original location for the wedding photos and we love the fair,” Celicia says with a laugh.
They met six years ago. Together with a friend, Celicia went to an event organized by the online dating site Relatieplanet. Her friend looked, Celicia didn’t. Still, it was Celicia who went home with butterflies in her stomach at the end of the evening. The Belgian Xander had made a deep impression on her and vice versa. The spark flew and two years later they sealed their love with marriage.
“It’s the parents who make it a problem”
Chaniel was born with HIV. He is not yet open about it at school, but he wants to.
Test with confidence
In the two years between their first meeting and the wedding, Celicia and Xander have already been through more together than the average couple celebrating their anniversary. “We had only been together for three weeks when we had to rush to the hospital at night. Xander had a blockage in his intestines and was throwing up blood. This was one of many vague complaints he had in a short time. At one point his doctor became concerned and suggested an HIV test.”
At the time, Xander was working in a correctional facility, and because his profession is considered risky, he undergoes all kinds of medical tests every three months. Also for HIV, or so he thought. Assuming that HIV absolutely could not be the cause of his complaints, he is confident that he will be tested. But the test shows that he is infected and that his resistance has already been significantly compromised, a sign that the virus has been active in his body for a long time. “It was quite shocking.”
On the same day, Celicia is also tested. The test is negative, but her relief is immediately crushed by the doctor, who warns her that the results are not yet final. She will be tested again a month later. Before the month is up, Celicia feels sick. “After two weeks I became very ill. Influenza, high fever. In retrospect, I think I had an acute HIV infection at the time.”
Two weeks after Celicia had been tested again, she got a call from the hospital. “I remember exactly. I was on my son’s school trip when they called: ‘We want you to come here.'” The doctors don’t have good news, Celicia also has HIV. “Sexually, I thought it was a relief. At first we did it every day, but after the diagnosis we had very little sex. We were very careful with the condom every time, which made our sex life much less spontaneous and boring. I didn’t have to worry about that anymore. Then I immediately thought: how I relate to this?
The HIV consultant at the hospital advised me not to tell everyone around me, but I quickly felt something like: I just want to be open about it, because if you don’t make a fuss about it yourself, you wouldn’t difficult for someone else, would they?” Her strategy seems to be working, as Celicia doesn’t often face a negative reaction. However, she is told that she and her husband are no longer welcome at a birthday party because someone else didn’t invite feel good about it.
The HIV consultant at the hospital advised me not to tell everyone around me
Another time, she has a run-in with her dentist, who has a protocol whereby HIV patients are only allowed into the clinic at the end of the day, to prevent possible contamination of his other clients. “I was surprised that they seriously believed that if my blood got on one of their instruments, it could infect another patient. The virus cannot live outside your body at all, when it comes into contact with oxygen it is dead after 90 seconds!” But the dentist persisted. “Well, I’m done, I left.”
Shortly after the diagnosis, Celicia develops physical ailments. “I got very tired. We live on the third floor and I used to run up and down the stairs, but now it felt like I had run a marathon.” The fatigue complaints lessen when she starts taking the medication, but she gets other discomforts in return, from severe stomach upset, discolored whites of the eyes, sore joints and intense tingling in her hands and legs. She changes her ‘cocktail’ four times to finally to arrive at a composition that her body can tolerate.
A child without HIV
After all the health problems, her body takes another hit. Women with HIV appear to have a higher risk of developing cervical cancer. Abnormal cells are actually found in Celicia’s cervix. Another medical mill she has to step into.
Celicia and Xander have a great desire to have children, and a stressful period begins. But they are there in time. In a minor operation, the abnormal cells are removed, and not long after, Celicia becomes pregnant. “We really wanted to have a baby, but we didn’t know if it was possible. At the hospital we were told that almost no children are born with HIV anymore in the Netherlands, so that was very reassuring. Because we are both taking our medication and the virus is no longer detectable in our blood, we were able to conceive naturally. There is only a possible danger to the baby during birth, because the baby is so well protected in your stomach that the virus cannot reach it. As labor was about to start, I had to report to the gynecologist immediately. Then I would be put on an IV with extra HIV medication for four hours so that our daughter would be at less risk during the birth.”
In the end, the delivery is so fast that Celicia has only been on the drop for half an hour. “I was a bit scared: did I get enough medicine to protect her? But the first test after the birth was negative, and so were all subsequent tests.”
Their daughter is already three years old, and the family lives a quiet life. “I enjoy and live in the present. I don’t worry every day, but occasionally you hear that people with HIV have strange symptoms and side effects. Then it haunts my mind: will this happen to me too? Some HIV patients become very thin or have eye problems, even blindness. Yes, that question occupies my mind from time to time: what will the future hold?”
To combat the stigma surrounding HIV, Celicia and Xander both provide information in primary schools. “Very important thing to do. Especially because before I had a huge prejudice about people with HIV. I thought it was only a disease for homosexuals.”
Despite both educating themselves about HIV, their views on the extent to which they want to be open about their HIV-positivity are light years apart. She: an open book. Him: Closed as a precaution. Yet their relationship is solid and unconditional. “Because we both have HIV, we find support in each other. It feels very strong.”
This interview was conducted in 2016. The surnames of Celicia and Xander are known to the editors.