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Comment:
It's the stigma that kills
J.
L. Hogue
July 19, 2007
This statement
about stigma surrounded by HIV/AIDS is a reaction to an article
by Fungai Machirori - HIV/AIDS: It's
the stigma that kills.
Fungai Machirori -- Wow
an amazingly powerful read ..Thank you so much for sharing your
observations and thoughts...on STIGMA ...
I'd like to share my
story in short because I personally struggle daily with HIV STIGMA
and internalized stigma despite having dedicated my life to my work
in HIV as an HIV healthcare provider.
I'm an HIV Clinical Nurse
Practitioner Specialist that has been working in HIV since 1983.
In 2001, I was diagnosed with HIV the end result of an occupational
injury in the ER ...
Suddenly, my
life changed 100% ...My family a group of well educated (Doctors,
teachers, business folk etc) whom I always thought of as hip on
most things were clearly not. My mother forbade me to tell anyone
(I now realize as a result of her own shame). My family knew that
I had been attacked and a psychotic suicidal drug addict HIV infected
patient had attempted to kill me to escape for a cigarette but they
never knew after the ICU and CCU and OR etc the end result some
8 months later when I sero converted...I could never forget the
day when my mother told me in the car," you will not tell anyone
in the family." I was so taken back by the PTSD and the newness
of the illness and everything I had been through I just said okay.
As time went on and I
was fired from my job (where by the way prior to all of this I was
awarded the Nurse of year award 3 yrs in a row by the VP of Nursing)
for not returning to my work due to the complications both physically
and mentally, I was able to finish Graduate school 4 days after
being given the surprise HIV diagnosis. As time went on, I realized
I was going to have to take care of myself and this pathway wasn't
gonna be easy ...I had become more isolated suddenly alone, I was
very ill eventually at 50 Tcells when meds were introduced as I
struggled to accept the diagnosis and everything that had happened.
I went into
the "Lazerous syndrome" they call it ..preparing for death
...yet wanting to live and struggling...Depressed and feeling like
life's best was past me, I called friends 2 a week many long-term
friends had wondered what had happened to me? Where had I disappeared
to ...I told them one by one what all had happened ... we cried
on the phone many rushed to see me fearing the worst.
I had little energy to
do much ...yet strangely the reaction of my mother that day caused
me to decide not to tell anyone in my family...to respect her wishes...
I lived a double life wanting to respect her wishes yet realizing
that how if I was a family member would I feel if I wasn't told
someone in my family had HIV and was very ill. How would I feel
if I was deprived of the ability to connect and talk and share and
maybe help them? I struggled for months in therapy 1x week with
this ...Was I depriving my family of the right to know or was it
my personal business? Was there a need to know? What if things got
worse? Would they be angry if I told them? Would they be angry if
I didn't? Who do I need to be thinking about? I'm sick as a dog
and I'm worried about what others think ...Now if I had cancer as
they initially thought I had (non Hodgkin's lymphoma) it would all
be okay...family actually though the work up had rallied in worry...perhaps
because no one lived past 61 and all died of cancer ...perhaps because
they feared their own mortality ...or were they next? Suddenly when
it wasn't cancer ...no one bothered to call ....no one asked questions...
On a side note, the funny
part to this is I remember in 1993 in an inner city hospital working
in a Psychiatric unit with a drug addict that was HIV positive and
her anger and rage and depression ...at HIV they things her family
did like burn the sheets after she slept over, make her eat on paper
plates and plastic utensils etc..and her comment to me was my family
are good Baptist folks they go to church every day ..she went on
to say I'm angry with God ...but I can't be ...It's not okay to
be angry that is a sin ...I shared with her that I felt that anger
was as okay to share as happiness or sorrow and I'm sure any god
would be OK with her expression of her feelings ...it was the next
day that she awoke and made an incredible turn which dumbfounded
the docs that had tried numerous medications ...my words as simple
as they were gave her permission to do as she felt she needed.and
she was able to move onto forgiving herself and move on in life.
I decided I needed to
do what I needed to...which was take care of me if I was going to
outlive this virus or it was going to eat me alive...I realized
that many months later when the therapist told me ."I didn't
think you were gonna make it ...the virus was eating you alive "
the shame, internalized stigma, depression, isolation, the fact
that I couldn't rally support as I was going through the most traumatizing
thing in my 40 yrs of life was amazing ...It was merely HIV ...the
thing you know I had dedicated my life to working in internationally.
I guess I thought that all those initial years of fighting to get
healthcare providers to even consider seeing PLHIVs back in early
80s when it was called GRID and there was no hope no treatment and
stigma was abound.... I thought had actually gone by the wayside
...by 2001 ...Well it seems it was just swept under the carpet and
I was hallucinating.
One day in 2002 while
my mother was visiting and I observed behaviors like not sitting
on the house toilet seat, my mother suddenly getting the HEP Vaccines,
not wanting to eat food prepared in the sink etc I guess I was taking
in all of this feeling like I was some kind of alien or something
and I had asked her to move her toothbrush and she blew up. The
only words to come out of my mouth were..."It's not all about
you anymore." She packed her bags and walked out not to be
heard from since ...that was June 2, 2002...funny thing is I haven't
heard from one family member either ...other than email telling
me to stop treating my mother so badly that she loved me ...no one
knows what all has transpired.how I lost everything and how I almost
didn't make it more than once...how I later went on to fight colorectal
cancer in 2003 and 2005 how have I lived for all of these years
having to go on disability and medical assistance and food stamps
and loose all my dignity.and who pays fo r the $2800.00 in drug
bills a month and who pays the health insurance.
I could write a book
on the way suddenly things were different for me...I never knew
things to be this way...I had never been ill a day in my life...the
way I was treated in a clinic, the pharmacist sharing my personal
info without my permission, what it was like to be on food stamps,
how the social services worker didn't care that my medical insurance
got cut off by accident by a computer and I couldn't get care, or
how Medicare kicked me out of the program due to a computer glitch
and I couldn't get my HIV meds 2 days before I was about to travel
for holidays and no one cared or how I felt traveling over the US
boarder with HIV meds fearing they'd find them and refuse me entry
back into the US and it goes on and on ....It's not just about putting
the pills in the trash bin.
I was as though those
days she buried me and decided to spare what she thought was the
end and spare herself her own internalized shame. She apparently
while walking earlier that week had told another family member she
wasn't going to make it and could watch me fall apart.
I on the other hand was
trying to pull it together seeing things improve very slowly was
fighting to remain positive.
I went back out into
the HIV community and got myself involved from grassroots in my
local community to state level planning, traveling and teaching
right through to attending the Presidential Council on HIV and international
conferences as an advocate.
I'm fighting in advocacy
work now the current CDC trends and the states trends to "normalize
" HIV by decoding our reporting names methods at testing times
and now the new Opt-out testing with no counseling trend (taking
away the last means one has to keep the issue confidential &
taking away removing the all but important education piece that
is done with HIV testing) and the lets decide HIV is chronic and
manageable like diabetes.as I see it.it's merely a way to cut moneys
so that it can be channeled to the so called "war on terror"...What
ever happened to the war on HIV? I don't have the answers to all
of the issues but if HIV is so normal why is it that in 2007 in
the USA were still dealing with all of these issues and the various
levels of stigma?
So I bring you to today
....to the pill bottles and what I decided to do with them ....I
kept every pill bottle I have ever been given since I've been on
medications ...and I have kept the pharmacy receipts for those bottles....I
have 2 huge trunks on wheels.
I used them to teach
...I teach about HIV in the community to churches ...as a Public
Health Nurse expert in HIV I have been asked to do presentations
on HIV to areas where I has not been spoken about ...people see
me as the health expert and I'm raising money for our HIV Quality
of Life spiritual retreats that we host 4x a year to bring PLHIV
together to support each other and to take the pressure off their
lives for just 5 days to give them a safe place to let there defenses
down.
People are always amazed
at the presentations on the reality of what is still going on with
HIV.many saying oh "I thought it was one pill once a day now."
It's no big deal.... (people aren't told that I have HIV) I have
throughout the presentation placed various flavors of jelly beans
in HIV pill bottles and I cue folks every so often to take one pretending
that they are there HIV meds ...they must take them whether or not
they like the flavor...sometimes I forget to remind them to take
their pills that are on a handout with a schedule...The goal here
is to have them experience what it's all like ...at a particular
point in the presentation I roll out the huge trunk and I open it
to reveal inside all of the HIV med bottles and I say these are
the medications I have taken to date at a current value of $158,
000, 496 US dollars...
Faces suddenly drop...then
we check to see who forgot to take their jelly beans and who didn't
take them because they didn't like a particular flavor or they got
involved or they put them away and so on...It's an eye opener for
stigma and HIV.
My plan for
the community is to eventually glue all of the bottles together
in the shape of a huge HIV ribbon and then make it thicker and thicker
(something like the Michelin man) and then travel with it as an
art exhibit along with an updated cost of all of these drugs...and
put HIV right out there!
Let's not have to hide
those bottles in the fridge/drawers or when we travel in the carry
on suitcase worrying they'll be found and how we will explain them
or when we dispose of them having to tie them up in a bag to hide
them and bury them in the trash ..Let's free ourselves of societal
shame, internalized shame and the stigmas abound...let me put them
in the plastic recycling bin along with the plastic milk bottle
and plastic containers!
Perhaps that will be
the day I will finally be free of this big monster I've been carrying.
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