As promised: a translation of my article in the dutch HIV news.

[bobik]

Hello. I promised some time ago to publish my article for "HIV Nieuws" , the magazine of the Dutch hiv-foundation here. Tim, Moffie, helped me with translating. Thanks so much, Tim.
Enjoy reading!
Coen
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Living with HIV for a long time

Coen Honig

HIV news 100 was a review of 25 years of HIV and AIDS. Reading the magazine,
I was confronted again with the full reality of the drama we went through in
those years. I saw pictures of people I have known that are no longer here.
I read personal stories of people who live with HIV. I was heavily
confronted with the fact that my own last 25 years still causes me a lot of
tension, fear and grief. Twenty-five years in which I was heavily confronted
with AIDS, first through my job, later with my own body, when I turned out
to be ill myself. When I talk about it with people who have not been
affected as heavily by HIV in those years I feel that they sometimes cannot
fully understand what it was like. Maybe nowadays living with HIV is not so
different for people who have had it for a long time, and for recently
infected people. I think the difference is that I live with a past with such
extreme experiences, that these experiences colour the way I feel about
things. My personal story is not a unique story, but to write an article, I
needed to have a broader perspective. For this article I have corresponded
and talked with other people who lived through the last 25 years with
HIV/AIDS and were affected heavily. Eighteen people helped me to write the
article. I tried to put their experiences together in a story to give an
impression of how the past affected their lives. Most of the people who
helped me are men; one woman reacted on my request. I also talked with some
people who don't have HIV but who lived with it because they were in the
middle of the crisis as well. 
Trauma

Many of the people I talked with described the period between 1987 and 1996
as a war, because so many people died. In fact so many friends died that it
was too big to let the feelings of grief really sink in. For many gay men
their friends were more important to them than their family, their friends
were a kind of family. The importance of friends was bigger because they
often had no children.  Those friends died, in a period in which we weren't
sure we would survive ourselves. Sometimes it was just necessary to "park"
the problems and not go through all the grief because it was just too much
to deal with. For many people who survived a war; for years later they still
have problems coping with their memories. For the people I talked with, HIV
was similar, old grief keeps on coming back. The medication we use nowadays
can have psychological side effects, and I read a lot of stories from people
who became depressed because of medication and suddenly got confronted with
the old grief they haven't been able to deal with. Often doctors change
medication when that happens but it looks like referrals to therapists or
support groups, who can help dealing with old grief, doesn't happen all too
often. I found it remarkable to find out that people who hadn't lost many
friends have fewer problems in their daily life now. Obviously it is easier
to deal with ones' own illness than with the trauma of suffering from
multiple losses of loved ones. Some guys told me they still were in the
middle of the crisis.  They have to deal with medication that does not work
good enough to give them an undetectable viral load, which gives them heavy
side effects. There are still people whose lives are being determined by the
medication they have to use. They have tried so much already, they begin to
lose hope.

Loss

The dead still play a big role in the lives of the survivors. Many of them
use rituals to help them to keep the memories alive; pictures in their
homes, burning candles, visiting the grave of a friend, special days like
the loved one's birthday or the day of his or her death. For the people who
survived the last 25 years, AIDS Memorial Day and world AIDS day are
important days to have memorial services with others. The dead remain
important even though some people mention the fact that they feel that they
are beginning to lose the feeling of closeness. The survivors have been
going on with their lives and at some point they realise that if their
partner would come back in their lives now, they might not fit in very well
anymore. Realising so seems to revive the grief; it is as if now the
memories are dying a bit as well.

Some people still have opinions based on what their loved one would have
said about things. After a partner's death the survivors deal with their
grief in very different ways. Some people keep on trying to find an
HIV-infected partner again, even thought they have lost more than one
partner. Often partners are people with a similar past, they are survivors
themselves. Others are afraid to start a new relationship. The loss feels,
sometimes even after 15 years or more, too big to deal with so people choose
to stay alone, or they have several people to have sex with occasionally
because having that one big relationship has become to frightening.   

Sexuality

Most of the people I talked with told me that HIV in one way or another
affected their sexuality. For many of them, the medication has changed their
body, sometimes invisibly when high cholesterol and side effects like blood
fats, diabetes or heart disease affect their condition. Sometimes changes
are visible; for example because of lipodystrophy. Some people also
mentioned that their age affected their need for sex. Most people found that
what happened affected their sex lives negatively, because of erection
problems, lack of energy or the insecurity of a changed body. Some others
said the change was positive, they were having sex with positive people and
didn't have to be afraid of infecting someone anymore. Some people don't
have sex anymore at all, and they say they don't miss it. When I ask them
why, they tell me that they consider sex to be superficial. I sometimes
wonder if HIV makes them look at sex so negatively, but I am not sure about
that from the answers I got. What I found remarkable is that the very big
majority of survivors do not feel at home in the reality of nowadays, with
bareback parties and quick sex. They cannot understand that the younger
generation of HIV-infected people consider HIV as something not so serious.
They are being confronted for the second time in their lives with a period
where sexual freedom is going to extremes and they remember the crisis that
came out of the first period of sexual freedom in the seventies and early
eighties. If there is one thing that shows the difference between gay men
who are newly infected and the gay survivors it is their opinion on safe sex
versus bareback between HIV positive individuals. (note: Dutch situation! )

Some of the survivors chose to have bareback sex with a positive partner,
but most of the people I talked with find having safe sex important. They
want to protect themselves from STD's and the idea of maybe infecting
someone can make pleasure in sex disappear completely. For survivors, the
consciousness of how serious HIV can be, seems to be bigger.

The wish to live

Despite all the hard things in life, the survivors have a strong wish to
live. Not only in sex have they tried to protect themselves from infection;
most people try to live healthily, eat well, take vitamins and use their
medication faithfully. It is all right to party now and then but they try to
live a regular life most of the time. (Maybe there is a bias in what I
concluded; it could be that this kind of questionnaires attracts people who
live with HIV consciously.)  The only thing that seems to cause unhealthy
behaviour is work. Many survivors work with such passion that they work to
long, forget meals, overstress themselves.

People who have failing medication regimes are the only ones who sometimes
mention that they find it hard to go on living. Life is so hard with all the
medication, due to the heavy side effects. A much used rescue regime
nowadays is a combination containing Fuseon, an injectable drug. This makes
life even harder, and their motivation to go on using the medication, is
sometimes the fact that death seems to be an even worse alternative.

Conscious

A cliché-remark survivors often hear is; "When you have been so ill, you
must enjoy life much more". Maybe someone who says that romanticises what
the survivers are going through. Life goes on and just like in the old days
there are things you enjoy and things you find boring or annoying. But it
was remarkable to see that quite a few people have made big changes in their
lives, to give their lives new meaning. They don't go on in a job they don't
feel happy in. They end the relationship that doesn't really make them
happy. They make long journeys. They study, just like I did with my
conservatoire study. I also talked to people who started to study painting
or art history. People also used their energy to give their career an
impulse, for example by doing a management study. Often I heard them say
"Although I have been through a lot of grief, it also made good things
happen in my life."

Veterans or (long time) survivors

The Dutch HIV foundation considers starting organising activities for
veterans. Not everybody is happy with the word veteran. It gives
associations with the old soldiers that every year come to Holland to
celebrate the end of the Second World War. Some others feel that veterans
are sort of victims, or they feel that the word suggests that one should
listen more to what the so called veterans have to say. Most of the people I
talked with did not want to be labelled that way. Others however do feel
they are veterans. One of them said "Yes, I have survived something like a
war, you know." Another word is long term survivors but that is confusing
because we already use that word for people who are long term
non-progressors. Maybe just Survivors would do?

Obviously the people I talked with would love to be in touch with other
survivors. Almost all of them said they needed to talk about their
experiences. You don't do that in a bar, and when friends come to your home
for a nice evening it is a pretty heavy subject, but it doesn't always have
to be heavy talking. Some people would like a party, in Amsterdam where they
could meet survivors, the consultant nurses and doctors of the early days of
the HIV crisis, the early buddies and the staff of the HIV foundation of
those days. A party to celebrate life.

If you feel you would like to be informed about activities for survivors,
you can contact the HIV foundation in Amsterdam.

[Moffie65]

Thanks Coen, and as I said in the e-mail, this was an outstanding piece of work!!

In Love.

[Val]

Dank voel, dear Coen!
This is a touching,  professional and realistic  article that you wrote there! 

Love,
Val
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[blondbeauty]

Thanks for the article. Even though I am not veteran, I can still remember the images of the first people infected with HIV and their deaths. That images from the 80´s is something young people never saw, but I kept on recalling them when I was diagnosed, so I think I can understand what you are talking about.
Kisses from Buenos Aires! 

[alisenjafi]

Hoi Coen! I just posted a piece from radio netherlands on lyme disease. Being another chronic disease I thought it would be interesting for people to digest. Bedanks voor uw verhaal.

Johnny

[Life]

Coen... I very much enjoyed the article..  Thank you..

[joemutt]

Coen, Congratz! I took the magazine in Dutch last week at the hiv centre in Amsterdam, and I read it here in English again, i think it's significant and valuable and I thank you for giving it to us.

[Jeffreyj]

Coen, thanks so much for sharing this. I liked the part about remembering those who are no longer with us. Thanks to many of those people, those of us still here have life easier. They were indeed soldiers in an ugly, painful war and made the ultimate sacrifice. God rest all of their souls.

Gone, but not forgotten

[bobik]

Thanks, everybody!

Hug

Coen