Kees Notenboom shares his experience as an HIV positive person in an interview with Kayode Gomes…..
Can
we meet you?
I’m
61years; I live in Utrecht since about 41/42 years. I studied mathematics,
after few years, I switched to computer systems. I worked until 4/5years ago,
then I switched to do a masters study in business information system in
Amsterdam, I finished that study about a month ago and now I’m
thinking what to do next. I’m in a relationship for 33years and we’ve been
living together for 28years. Somewhere along the line I got HIV. I was detected
in October 2007, but I must have got it maybe for 10 years without knowing, I’m
not sure.
At
the end of 2005 I had some spots on my upper body and my face, it couldn’t be
cured and somehow I went to the dermatologist and another one and another one
again. At the end, I was referred to the university hospital, from the
beginning they tried some remedy and potion, but it didn’t work out. At the end
in October 27th, I was very tired and it continued everyday and
there was no explanation for my tiredness, so I went to a doctor in the university
hospital and had HIV test at the end where I was detected positive; too much
surprise to me, I didn’t expect it, however it felt as a relief, all my problems
were suddenly explained. All the things (health issues) I had could be related
to HIV. I was detected with 52cd cells, I opt for immediate treatment, and
there was no doubt about not treating it or delaying treatment. So within a
week I started my medication. Within 3months the viral load was indictable. And
well, I have no problems except for my skin with little problem, I use a few
medications for it and that’s all, no outside effects or effects of the
medication and so I’M HAPPY AGAIN.
Were
you in a relationship as at when you were detected positive?
Yes...Yes...yes,
my relationship is been for 33years like I said earlier, my boyfriend or
husband, though we are not legally married, know my status and accompanies me
when visiting the doctor in case the doctor says things that I will forget.
So
how did your boyfriend take it knowing you are HIV positive?
That
is more or less a forbidden question, most people don’ like to answer such
question I know, but I have no problem answering that question, but I don’t
know the answer to that question, I have no idea, I have no clue. I was never
f**ked by anyone at that time, to my honest opinion, I always practice safe sex,
we are not monogamous, but on the other hand, maybe I had sex with 2/3 people,
but not that much, maybe just 2 in a year. It’s just BAD LUCK. Whatever happened,
I have no idea. We all thought at that time it was a virus I had a long time,
and I have no idea how to reconstruct which people I met or may have met10
years before. I strongly believe I got the infection 10 years before it was
detected.
HIV/AIDS
was new to the world at about the same time I came out of the closet in the
early 80s, I just admitted it to myself that I was gay, a lot of people told me
as first reaction to my coming out; “Oh, did you hear about
the gay cancer?”. I and my
boyfriend/husband are very educated; my husband is a professor in lots of
universities in Netherlands. We know how things are and by the time I was
detected HIV positive, I also knew it was not a deadly disease anymore. It’s
not a nice message to receive, but I didn’t panic, I just thought; oh my God,
wow, ok that’s it, maybe I will live a few years shorter than I will have…but, HIV
IS NOT A DEADLY DISEASE. So let’s get medication and we will see what life
brings me. For the first 2 years I hadn’t told anybody except my close inner
circle family and friends that I was HIV positive, reason for that is because I
was working in a place where I still suspect discrimination even of gay people,
so if I come out as gay and even an HIV person then it won’t be nice to work
there anymore. So I decided to limit who knew I was HIV positive. Well, I left
that company 4 years ago, and actually now is no problem for me to tell anybody
I’m HIV positive with two exceptions, my mother and mother in-law…(laughs).
They are both very old. I don’t think it will help any of us about letting them
know my status. But other people, some neighbors know that I’m HIV positive,
others don’t, you have no control over who is telling who what, but I HAVE NO
PROBLEM WITH ANYONE KNOWING. It took me few months to get used to my
medication, first 3 months was 2 twice a days, and now it’s just once a day 2
pills. I do not forget to take it because I’ve programmed my phone to remind
me. So I take my pills very consciously till date for about 9years now.
So
how is it like, living positive?
Just
like a gay person not positive, I think there a lot of diseases that are much
more worse to live with; in form of cancer, mental disorder; these other
problems will make people uncomfortable than I am.
Same
sex union is been legalized in Holland since 1945 or 1948, something like that,
it was only a short time in Netherlands history that homosexuality was not
legal. In the early 70s, there was equality between straight sex and gay sex.
Straight sex was allowed at the age of 18 and gay sex was allowed at the age of
21. In 1999, civil partnership was allowed, then in 2001 or so, can’t really
remember, it was changed to fully equal marriage, so it’s not a problem
legally, though discriminatory situation occur. There are places in the city
where I could not walk hand in hand with my boyfriend, but usually it’s no
problem. Sometime we walk hand in hand and get strange looks from people, other
people reacting in an admiring way. A lot of people in their mind might not be
pleased that I’m HIV positive or that someone is HIV positive, that’s possible.
As far as I see, in the gay community, hardly anyone have a problem with being
HIV positive anymore. I’m using several dating apps; I meet other people for
sex. Well, there is usually a point in time I tell that I’m HIV positive;
reactions are ok, if you play it safe. I can’t remember I had any rejection, at
least not because I’m HIV positive, just maybe I’m not the right type for the guy, that’s possible. But I don’t think that’s
a problem. I don’t think I have any negative influence because I’m HIV
positive.
How
is it possible you have sex with your partner and he is negative?
That’s
not true, we don’t have sex anymore, we are that long with each other, we love
each other, we cuddle a lot, but you can’t call what we have sex. We are not
sexually attracted to each other anymore. We both completely have different
preference in sexuality, so we both have sexual relationship outside our
marriage. And that’s the reason why I think he is negative and I’m positive. It
has nothing to do with my status, in the cause of the years, we gradually
distance from hardcore sex.
Do
you have sexual relationship outside?
Yep,
I’ve got two friends I encountered. I started practicing hardcore sex few years
ago. They both prefer to use condoms, but there are also situations that I like
to meet other guys instantly and then well, there are a few people who want to
have sex without condom. But I usually want to know them, talk to them, what
they do regularly, if they get tested at a regular base, if they have other
diseases and if I don’t trust it, I refuse to have sex without condom. Two or
three times I had sex without condom because I trusted the person. In one situation
I know the other person was in same situation as I’m, HIV positive in a rather
safe environment living, he knew what he was doing; he knew the risk of
unprotected sex.
Yea,
but not always true, there was one situation that we didn’t have to talk, I
just was about to tell the guy that I’m HIV positive and at that point, he
said; “don’t tell anything” he just jacked off and that’s all, no risky sex
what so ever. On the other hand he must have known I’m HIV positive because we
knew each other from the dating app, and my status says; SAFE SEX, NEED DISCUSSION. You will always know, if there is need for discussion, then the guy is HIV positive. You can
recommend that. The guy wanted to see me again, but I’m curious whether we will
see or not.
I
think it’s complicated, I know what it is living with HIV in the Netherlands,
maybe I have an idea what it is in Europe or western Europe, but I don’t know
anything of your country (Nigeria) or continent (Africa). It also depends on
how well educated you are, if you read papers, catch up with the news on HIV
and other diseases and you probably know much more than the average
person. It could give you confidence in
how you live or not. I also read and checklist people sometimes, I see that
they are really in panic because they are HIV positive, young people, not well
educated I guess, not sure. Generally I think in the Netherlands it is the
right thing to talk to people, not only your doctor, but also to your friends
and family. Just talk, think and rethink about your situation, HIV IS NOT A
DEATH VERDICT ANY MORE, I suppose as it’s always. Start medication as soon as
possible. Don’t hesitate; I hope that you can pay for it, that could also be a
problem in some countries I suppose, and the most important thing is; HIV MEANS
YOU HAVE CAUGHT THE VIRUS. Well, that’s just BAD LUCK, you are NOT A BAD PERSON,
you are an UNLUCKY PERSON. Once you realize that, you are able to influence
situations. You know ok; “I’m a person, I’m worth living, I enjoy living, it’s
already that I’m HIV positive”. It’s good to be subconscious about your
situation and JUST BE CAREFUL AND NOT AFRAID TO LIVE, it’s not necessary. On
the other hand, you have to be careful, who do you tell, who do you not tell.
Yep, because you can never un-tell a story, and people do remember, they will
remember especially in bad times.
What’s
your advice to people that are HIV Negative?
In
the Netherlands, I would say if you are negative, as a lesbian, just follow the
headlines in the news, if you are a straight person and monogamous, it’s the
same. Don’t be afraid of things, you can’t get HIV by shaking ones hand, or
sharing glass cups. If you are straight and not monogamous, get tested, straight
HIV person in Netherlands are not very many, MAJORITY OF HIV POSITIVE ARE GAY
PEOPLE and DRUG ADDICTS. But get tested on regular basis if you think you might
be in a risky situation or just read about it, inform yourself. THE INFORMED
PERSON IS MUCH STRONGER.
What’s
your advice to LGBTI?
First
and most important is ENJOY BEING WHOM YOU ARE, enjoy life, don’t be ashamed of
whom you are because you are just an LGBT. If you have problem being LGBT, you
will have problem finding jobs, housing, you will have problems looking at
yourself in the eyes, talking to friends and family on whoever you are. If you
are as unlucky as I’m catching the virus…that’s just it, you are unlucky, you
didn’t do anything wrong, I suppose, usually it’s not. Ok, there are very risky
situation you shouldn’t have done, but accept yourself.
Closing
remark
If
you are HIV positive, please look for other HIV positive person, you can help
each other. Start looking for other people, there are organizations, just look
out for people in same situation and talk. It’s really important.