Wednesday, July 16, 2014

so.... this is what stigma looks like

sigh. this is a post I never thought I would write. ever.

but I am. because this happened and I need to process.  And I process through writing.

some background:
I have felt like crud all summer.  It started with strep throat & a sinus infection.  I thought I was better.  Then last week I had a soar throat and an ear ache.  I went to my doctor and she said it wasn't strep, but I did have an ear infection.  I started taking another round of antibiotics.  After a few days I was having chills and a slight fever on and off, and my ear is all clogged like someone has their hand over it so I can't hear well.

Since I was not improving much I made an appointment to see if I could switch my antibiotics.  They switched them for me in June and I figured that is all I needed.  My regular doctor didn't have any openings until later in the week so I scheduled my appointment with another doctor in the clinic.

now to the real story:
At the doctors office I explained my symptoms to the nurse and then again the doctor when he came in. The doctor said he would do a couple tests to see what was causing me to feel the way I did and then we would talk about them.

The nurse came into the room and tested my ears for pressure.  Apparently they are both fine, even though I can't really hear out of my left ear.  Seriously, ask my kids.  All week I have been telling them to stand on my right side because I can't hear.

Anyways.  Then I headed over to labs.  I overheard the technician asking how to order an HIV test.  My body immediately froze and I tensed up.  I knew what was coming and I didn't like where it was heading at all.  She came over and said she would be right with me that she needed to figure out how to order a test and then she would take my blood.  I asked her what the test was for and she stated, "HIV".  I told her I couldn't possibly have HIV.  That yes it is in my house but that I could NOT get it from my boys.  She informed me that she was only doing her job and following the doctors orders.

You all.  I lost it.  I was so mad.  There were two men there to get samples and transfer them to who knows where and I told them ALL about how HIV is transferred and that I wasn't doing any of those things with my kids.  They looked at me like deer before a car not knowing where to move.

One of my kids nurses walked by and saw me distraught.  She let me vent to her where I just broke down crying and stated that I couldn't have HIV and that this was stigma.  Through tears I said I was glad my oldest wasn't there to see what was happening.  She told me to get the test to prove the doctor wrong.  I calmed down a little, but told her I was mad.  Then she left.

When the technician was all ready I headed over for my blood draw.  I sat there in silence not looking at the technician as she took my blood.  Tears streaming down my face.  I felt so stupid for not walking out of the clinic.  I felt so violated.  I felt like I was doing my boys an injustice by sitting there and letting them take my blood for something that I cannot possibly have.  Like I didn't have a choice at all.

Then I went and got an x-ray of my sinuses.  And then I went to wait for the doctor.  By this time my husband had come as I called him somewhere around the time I found out what was happening.  We waited and I was shaking so mad at what had just happened.

The doctor came in.  He told me that it looked like my hearing was fine and he hadn't seen anything wrong with my ear.  Which still makes no sense as I can't hear from it.

He then went over my x-ray and showed me that I do not have a sinus infection.  Ok. Whatever.  He stated that he looked at my CT - Scan from a month ago when I did have one and that when I had one it wasn't that bad.  You all - I was throwing up, had a fever for days, and I slept about 18 hours a day for a week.  It was bad.

Then he said he ordered me an HIV test.  I told him I was really upset by this and that I didn't possibly have it.  He told me that he just wanted to rule it out.  I said I have ruled it out as I don't have sex with my children and I don't do drugs with them.  RULED OUT.  NO CHANCE of having it.  He said, "I don't believe you have it but you are exposed to it by being around these kids".

This is when I stood up and said, "I fight against stigma daily for my boys.  I don't have HIV, I can't have it by living with them. This is stigma and I am not staying to listen to you".  He told me that it wasn't stigma.  I shouted, "YES IT IS" and walked out, shaking, tears streaming, still feeling like crap.

You all it is stigma.  If there was no one living with HIV in my house this doctor would have NEVER IN A MILLION YEARS thought to test me for it.  It is utter non-sense.  It is ridiculous.  It is frickin 2014 and there are medical doctors out there who think you can get HIV from being around someone with the disease.

It has been a couple days and I am still in shock of what happened.  We are in a wonderful community where our friends and family have embraced our children with open arms and love.  When we first brought Tariku home we were so nervous for our friends and family to accept him and not be afraid.  They were and are awesome.  They learned how the disease is spread, they have supported us.  We have had no stigma at all from them.  Some questions, but we started the process of adopting a child with HIV with questions, and so we answer them as best we can.  We teach others.  So they are not afraid.

For stigma to be thrown in my face from the medical community is like a punch in the gut.  I never thought it would come from anyone in that profession.  It is pure ignorance on his behalf.

What I want you to know is this:

1. YOU CANNOT GET HIV from living in a normal household situation with someone who has it.  Not from drinking from the same cup, sharing a toilet, giving hugs or kisses.  You just can't.

2.  There are THREE WAYS you can get HIV:  1. Sexual intercourse 2. Sharing drug needles (any needle that is closed).  3. Mother to child transmission through childbirth or breastfeeding.

So this is where I sit.  trying to process an event that has me baffled.... while also trying to get better (thankfully the antibiotics I am on seem to be working now).

If you want or need any information on HIV please go to the following sites for information:

Project Hopeful





Prior to writing this post I contacted my children's Infectious Disease nurse.  She was upset by my experience and told me I had every right to be.  I also told my children's pediatric doctor, as we had an appointment with her the following day for one of my kids.

Yesterday afternoon I received a phone call from the doctor.  He called to apologize.  I told him why I had been and am still upset by what happened.  I stated that had I not had children with HIV in my house he would have never ever tested me for that.  He told me I was right, said that he was in the wrong and that he was sorry.

I don't know if one of the doctors I informed or one of the nurses that saw me that day contacted the doctor to let him know he was in the wrong or if he thought of it himself.  I guess I don't really need to know as long as he understands that he was wrong and that he cannot treat his patients in that manner.  I told him I did appreciate his apology and that I hope he learned from his mistake.

I will be writing a letter to the office manager to follow up.  I feel they need to know about my experience.  I am thankful for an apology, but I also need to know that this will not ever happen again in that office.

1 comment:

Morénike said...

This quote comes from an article published a few years back by the American Medical Association: "It should be reasonable to assume that one group of Americans—those who provide health care—do not share such misconceptions and do not discriminate against or stigmatize people living with HIV. Regrettably, that assumption is incorrect. Discrimination based on HIV status persists even within the health care system. Surveys of health care workers themselves document this reality. For example, a 2006 study of specific-service health care professionals in Los Angeles County found HIV discrimination to be prevalent. The researchers surveyed 131 skilled nursing facilities, 102 obstetricians, and 98 plastic and cosmetic surgeons to determine how many of these institutions practice a policy of blanket discrimination against people living with HIV. Of the institutions surveyed, 56 percent of the skilled nursing facilities, 47 percent of the obstetricians, and 26 percent of the plastic and cosmetic surgeons refused to treat people living with HIV and had no lawful explanation for their discriminatory policy [5]."

Questionnaires conducted by AIDS service associations in the US and other HIV advocacy groups in the US and abroad have found similar if not worse results. The medical "professionals" often harbor (and spread) misinformation about HIV that is harmful and hurtful to us all, regardless of serostatus.

I'm so sorry that this happened to you, and I am proud of you for speaking out against it. HIV stigma is far more problematic than living with HIV itself. It CANNOT be tolerated from anyone, not even a so-called educated and highly regarded "professional." We must call it out, and we must fight to extinguish it. I hope you'll permit this blog post to be shared; the greater public needs to know that this IS happening.