I use to dread the visits to go see my HIV doctor, I knew I would leave there even more confused and lost then when I walked through the door. I also knew there would be no point in asking questions about my labs or anything else because I would never get answers because my doctor was always far too busy to take time to do things like this.
I remember when I had the Staph Infection and he told me
“You have got to do a better job at cleaning this”
“I do the best I can. Have you forgotten that I am homeless and this Staph Infection is in an area I can not see?”
He just looked at me like I had said something wrong. Later it would be this same doctor who would stand in the way to me getting housing which would end homelessness. When I think of what I had to deal with since I was diagnosed my heart sinks for all the people who are too afraid to speak up for themselves because this would mean the lousy care they are already getting would get worse.
Thankfully all the disrespect, hurt, shame, headache and stress of being HIV positive with less then lousy care is behind me because I now have a great doctor backed by the awesome staff of a great clinic. Thanks to this doctor and clinic homelessness came to an end after 29 long months. HIV is no longer something that I wake up from with nightmares of being at my own funeral and watching my friends cry because I was dead because of access to care. HIV is no longer something that I am stressed about, in fact besides doing the community work that I do with people who are HIV positive or have AIDS, it no longer is something that dogs my mind day in and day out.
A few weeks ago I went in for my HIV labs and I had no concern, Tuesday, April 13, 2010 I went in to get the results of the HIV labs and once again I am in a really awesome place. My t-cells remain very high and my viral load is still very low. I had the chance to ask my doctor a few questions about HIV meds and all the new debate and discussion as to when someone should start meds. It was so reassuring to hear her say that my HIV care is based on my medical history and how my body is doing against HIV. It was so cool to once again hear her say that she isn’t concerned about me starting meds, she just wants to help me remain healthy.
Even with all the stress that was in my life, my body has done an awesome job at defending itself against HIV without the assistant of HIV meds. It’s great to have a doctor who is willing to allow my body to do its job. It is also nice to know that when and if the time comes for me to start HIV meds it will be something she and I will sit down and talk about. I’ve heard many people say how their doctors had already picked out meds they would start, but when I asked my doctor she told me it was something we would discuss and we would come to a decision together.
I’ve heard and even read so many people say, just do what you doctor says and do not question it, I’ve also heard people say that ASO’s are the only place to get sound advice about HIV and AIDS. From experience of being sick since birth with Sickle Cell and my battles with cancer, I know that simply taking advice and not asking questions or even asking if there is another way, is not something that I would consider to be very wise. I certainly don’t put a great deal of trust, nor do I have a great deal of respect for ASO’s and this is also true for my local Gay and Lesbian Center. I feel this way because when I turned to these places for support, answers and even education, they failed more then 95% of the time. Now this isn’t to say that I have not met and have a huge amount of respect for a few people who work at such places, however it has been my experience that these places don’t always do the great jobs they would have us believe they do. Furthermore I know plenty of people who share my feelings about ASO’s and the local Gay and Lesbian Center.
So what do you do when the places you are told to turn to for support are the very places that cause so much hurt and harm. What do you do when you’ve done all you can? What do you do when you don’t trust the doctor or clinic where you “care”, for lack of a better word is administered? Who can you turn to when the system in place is failing you?
First of all you don’t give up and certainly do not settle simply because you are homeless or poor and told that this is your only option. You hold on and work as hold as you can to find another place that will respect you, that will offer you complete care and treat you like a human. You keep believing in yourself and your ability to weather the storm that is before you. You demand care that you are entitled to and you do not rest until you get it. If this upsets people and causes them to say you are a “trouble maker” and say things like you think you’re too good and “who do you think you are” you look them dead in their eyes and tell them exactly who you are. You tell them that you are their patient and you are holding them accountable for your care. You tell that case manager that you don’t care how heavy their case load is……”do your job” Don’t ever allow anyone…..and I mean anyone……including yourself tell you that you don’t deserve the best care regardless of your ability to pay.
You stick you chest out, square your shoulders and dig in your heals. You stand firm in making certain that they live up to their oath “first do no harm” you hold them accountable for for everything thing they told you they would provide regardless of how heavy their case load is. You hold them accountable for every federal dollar, every single private dollar they receive as if it came from your pocket and you don’t give up.
Being sick is stressful enough and you should not have to deal with any added stress, headache, hurt, harm or pain for the very people who are supposed to be helping you.
I am in a place where my doctor is awesome, my clinic is awesome, but there are people who don’t share the same feelings that I now have about my HIV care. There are people struggling through a system that is designed to cause setbacks, hurt, harm, pain and even death and I will not rest until it is fixed. I will not rest until studies are conducted fairly and accurately and I will not rest until places that get federal funding are held accountable for such funding. I will not rest until patient care becomes more important then how much the Executive Officer is paid. I will not rest until budget cuts that affect people who are suffering first include deep cuts for people being paid outrageous amounts of money for no real reason.
HUMANITY most always come before politics and certainly before the narrow minded thinking and stigma of “community”
I refused to give up on me, despite all that was encouraging me to do so and I refuse to give up on people that this nation has given up on simply because they are homeless and poor battling HIV or AIDS.