My experience as an LTS..kicked to the curb: The stigma is still alive!

[jm1953]

I have had HIV/Aids for almost 30 years come October.  Also have chronic depression and anxiety.  Together, a double stigma, basically a nightmare. 

The friends I had who are HIV but infected and on meds much later, have become distant because the last six or more years I have been declining.  Many have not seen what we have seen in the 80's and 90's literally losing almost all of our friends and even partners.  Now they don't want to see me because I suffer constant fatigue, and a myriad of other problems so unlike the person I used to be.  Maybe they look at me like looking in the mirror of what might happen to them. 

Perhaps I am the exception to the norm, but my life revolves around doctor's appointments, much medication, many procedures, counseling appointments, you name it to treat the many ailments I have.  Last year for example I had 85 Doctor appointments, ten procedure, 2 MRI's, and 1 CT.  Let alone all the labs in between.

So when people tell me they think I am making more of my treating AIDS and Depression than I should, I show them the list I had to compile for my insurance company to substantiate many of my treatments, and they stop being attacking, but just don't come around anymore.

The exception to the rule are three good solid friends.  The only family I have is my sister who unfortunately disowned me long ago because I am Gay.

I guess I am venting, but I honestly don't think any of us LTS need to explain ourselves or apologize to accusations and criticisms made by anyone about being at possibly the end stage of our illness.  Ironically, most of us are the ones who participated in the Clinical Trials that paved the road for the meds they are on now which is saving their lives!

Sorry, had to get this off my chest.  I realize this is my personal experience with the reaction or stigma attached to my illness as we all know this is an individual type of disease.  But perhaps others may relate.

With all this put aside, I wish the best for everyone in the forum.

[Pozinmaine]

Dear jm1953,

I'm hearing you and can very much relate.  Diagnosed in the late 80's - participated in many trials - wore my scarlet letter for outing myself to educate others - worked to build organizations to serve PLWA  - all while shitting my pants and wasting away.

Now, I am scorned for saying I have AIDS, have to beg for proper medication and care and those organizations we worked so hard to build as refuge often no longer have a place for people you and me.  Depression is a given I think, as is anxiety.

It's good to vent.  You have every right to feel the way you do when others downplay your predicament.  Get it out!

Few people could imagine what it is like for you.  Fewer every day. Many of us are feeling this way.  You are not alone!  I promise you!

[jm1953]

Thanks PozInmaine!

It is good to hear from someone else who can relate.  I appreciate your understanding and support.  There seem to be fewer and fewer of us Long Term Survivors.  And like you said, we were on the front lines of this illness watching our friends and partners die as we were getting sicker.  Participating in clinical trial, after clinical trial.  And being an activist to get more meds released, plus so much more.

You are right about having to get this off my chest.  I'm not sure if that many people who read my post relate to it, although I have gotten a couple of very kind
Instant Messages from people just like you and me, and of course your caring response.

Maybe people are scared to talk about it.  I don't know.  But I really feel the stigma being an LTS not really fitting in to any category.  It is not how I imagined my life to turn out.

I wish you my very best.  Thanks again for helping me less alone in this.

[Pozinmaine]

Dear JM1953,

Survivors are very scared to talk about this.  I am.  This disease comes wrapped in stigma and ignorance and hate.  It's hard to stand up as a whole human being once you've been where some of us have been.  Speaking for myself I will never be the same.

We have the opportunity to talk about how we are stigmatized and maybe recognize the insidious nature of stigma.  It is the source of some of our greatest suffering.  It is a poison and it kills.  It might help us to understand how we process this poison emotionally and internalize it.  How it leads to this crippling isolation so many of us endure.
 
I have found that reaching out to others like myself has helped me greatly to feel less alone.  I hear so many familiar themes when I listen to other survivors whose lives, like yours and mine, didn't turn out the way they imagined.

Perspectives like yours and that of other survivors give us greater insight to dissolve the barriers and re-imagine life as it comes hurtling at us day to day.

I  wonder what others do to counter the stigma most of us experience.

All The best! 

PozinMaine

[harleymc]

I don't let stigma define me or constrain my life.

[RC]

Hello all, I just discovered this forum from POS, and it truly feels like a gift from somewhere showing me that I am not alone and I thank you all for 'being you'. I have suffered from HIV for 18 years. Unfortunately, I am from the State of Hawaii who have recently decided that they will no longer contribute to keeping any of us alive. They have made HIV/AIDS testing mandatory for the underinsured population without informed consent. All women here that live under the poverty level will be tested. The consent they will use to do this testing is hidden in a simple consent to treat that we all sign just to get into see a doctor. I am witness to a bill being signed forcing the insurance companies to pay for the testing. Once tested, if found to have HIV it will be the lab companies that will report each person to the Dept. of Health by name and address. Once reported you are required to show up to all doctor appointments concerned with your HIV or you will be contacted by other local government agencies to do so (like the police). They have stopped all education to attempt to control the stigma releasing an army of concerned citizens to take matters into their own hands. The medical community already releases all medical records to any State agency that wants to have them and their is absolutely nothing any of us can do about it. After 18 years of staying under the radar my whole family has been notified, along with any potential employers, social groups and even the local hardware store has been informed. I have had three car loads of people come to my home to beat me up, a landlord that refuses to repair anything because he does not want to catch it, I have had doctors insisting that I am a drug addict, a whore, and any complaints are met with accusations that I lost my mind and should commit myself. The details of the horrors I have been put through the past 4 years will make a great selling book, I only hope I can get away and recover enough to write it. It is worse here now then it was at the start of our battle to live. I have been taken off of all my medications and have been repeatedly assured by the medical community that it is alright for me to die now. When this reality first came at me it was made very clear that there is nowhere to turn for help of any kind. I have been given the option of leaving the islands or giving up and dying without complaint. To complain has only gotten me on the 'do not treat like a human-being' list, along with medication repeatedly being given to me that will kill me when combined with any HIV medication. My body has literally been left deformed and painful after one doctor repeatedly stuck me with a dirty safety-pin and then admitting he did it and that it is common procedure here to use a safety-pin taken from a dusty drawer. From that point on NO doctor will even look at me. All doctors here are a single group and refer to themselves as The Group. My last chance was given recently telling me that if I were to check myself into the hospital and admit I am insane and that no doctor ever did anything wrong to me, that it was all in my mind, that there is a slight chance that I will be forgiven and receive treatment. Please believe me that everything I say is documented, I have an extensive education and no criminal history. I have chosen to evacuate instead of giving up the only thing I have left that can not be taken from me and that is my integrity, or what I see as my integrity. They want me to say I am dishonest and I am not and never will say I am. I would prefer to die. I live under the poverty level, which is not from being lazy or not working as hard as I can. At this point I have no family nor friends left and have no idea how I will get out, but I will. Somehow... Any suggestions of where I might go to find some type of relief would be appreciated. I have no doubt that I am not alone with this cause and I thank you all for providing this forum, to in the very least have others to talk to. I think the one thing I might contribute is to point out that we need to stop referring to ourselves as being HIV. We are not HIV. We are not the disease. Just those simple words are insinuating we are bad to all those who hate us already simply because they do not understand. If they did understand they would be able to see that cervical cancer is also a sexually transmitted disease, and we would get pink t-shirts, hugs and ribbons like cancer survivors do. We are not HIV, we suffer from HIV. We are survivors from a disease that we did not ask for or that we deserved to have because we are bad people (as my church insisted I admit). We are not bad people, we are strong survivors. We not only suffer from HIV, but we are forced to live in shame, alone, and treated as less than human. I refer to myself as a HIV survivor and I never miss an opportunity to point out that I am the closes thing to a saint that 'they' will probably ever meet, along with the fact that it could happen to anyone.......and it will. I hope I don't disturb anyone's since of well-being with pointing out what is happening here....but these things I say to help the next person like myself that might be faced with this....as going through it you actually start to doubt your own sanity and it is very easy to simply give up and let 'them' do what ever they might with you. Be strong always, as we are the strongest of survivors......we are alone, but I thank God for all of you. Sincerely, RC

[jm1953]

RC, First off Welcome to the Forums.  Here you will find people who understand and care.

I am sorry you are going through so much.  I wanted you to know I lived in Hawaii from 2000-2008.  I lived on Kauai, and then Oahu.  The situation must have changed much since I left because what you describe is something I never experienced as a long term survivor with HIV. Almost 30 years.

Even living on a smaller island, Kauai, I found much support not only from the AIDS Service Organization there, Malama Pono, but also from the State of Hawaii itself.  I gained some knowledge how the system works there having positions on three Board of Directors.  Two AIDS Service Organization, Malama Pono on Kauai, and Life Foundation on Oahu in Honolulu.  I also served on a Board of a large non profit organization serving local Hawaiian's medical needs through established clinics on the island.

I do not remember anything about having to register your status, and then having it be out there for anybody to look at, unless you just turned positive perhaps.  It would seem that would be a violation of HEPA or something like that.  If you have not already, I would suggest hooking up with your island's AIDS Service Organization ASAP.  There you will be assigned a case manager, and most probably help in finding housing, access to the food pantry, and great support and referrals. 

Secondly when you hook up with your case manager, he/she can get you enrolled with ADAP and HDAP, a program set up by the state Department of Health where you can be eligible to get all your meds mostly paid for, and also get quarterly blood draws free of charge for the Department of Health, and your doctor's eyes only.

Also if you get situated into an apartment or house, there was an organization called Gregory House on Oahu which can help with your rent.  There also are more affordable housing complexes going in I understand.

I would first start with finding your nearest AIDS Service Organization, and get an intake appointment with a Case Manager.  The rest should fall into place, as what I described were the services provided me, and much more.  Or call the State Department of Health for referrals.

One thing I remembered was in the AIDS Service Organizations I worked for, we had a hard time reaching the Native Hawaiian, and other locals because the families would not allow anyone to know if someone in there family was sick.  And many times would take care of them until it was too late to get help.  You don't sound in that category though, and I hope that has improved.  It is a cultural thing which I respect.

Again, in the 8 years I have not lived in Hawaii I suppose things could drastically change.  But what you are describing seems very strange, unless a new federal law to divulge has come through. 

In any case, maybe I have given you some ideas.  It sounds like you need some solid support and a case manager at an ASO can help you and hook you up with what you need.

IM me if you any other questions ok!

Sending you fond aloha

[konkrypton]

JM1953, I feel your pain. I don't have as many doctor visits or problems as you, perhaps, but I have enough. I'm a 27 yr survivor (I'm 55), lost my first partner of 9 yrs to it and my second to an accidental opioid OD.I had both hips replaced due to osteonecrosis caused by my meds and back surgery because I fell and my brittle bones cracked. I wake up in pain most days, and wear a pain patch and supplement with pills when I need them. I feel guilty every day for not working and being "on the dole" as Republicans say.

But even worse than all this, is the horrible loneliness. I had an active sex life both as a young man and when partnered, but the last 8 years I've been celibate. I can't drink due to pancreas damage from medical trials in the 90's and I no longer use drugs of any kind except my pain meds. So it seems pointless to go to the bars. My state is one that requires disclosure before sex (which I would do anyway), so the parks or baths aren't really a viable outlet. I've tried using online dating, but I don't photograph well and do better when I meet people in real life.

Despite all this, my health is pretty good, all things considered. I'm undetectable and my CD4 count is about 700. I've lost my "Crix belly" and "buffalo hump" after using Egrifta and my weight has remained stable for some time. I feel like I have a lot of good years left in me, but feel them slipping away every day. I guess I'm just too damned feisty to die, LOL.

[AlanBama]

jm --

I understand exactly what you're saying.   We (my partner and I) feel that our lives are nothing but doctors' appointments, tests, treatments, etc.   My family is loving and caring, but they don't understand why we "don't do more" or "get out more".   I get that.   I would LOVE to get out more.   We are both pale and very white, because we just can't get in the sun anymore.  I realize that compared to other people, we look kind of washed out and have that 'sick' look.   But I don't know what to do about it.   We're doing the best we can, and I know I am blessed to have a partner to share things with.   The aggravating thing with that is that on a day when I might feel pretty good, he doesn't feel so well; or vice versa; so the days that we BOTH feel well and feel like getting out and doing something are few and far between.

We pretty much deal with everything in silence; there's no one to tell it to, no one to understand, no one to care, and CERTAINLY no one to help.

Just know that you aren't alone; not sure if that is much comfort, but at least you know there are "others out there" -- it's easy sometimes to feel like an animal caged in a zoo.   Your world becomes very narrow.   But we're here, and we're still going.    Best wishes to you--

Alan

[RP61181]

I am 35 and I was born positive.  You described what I go through perfectly.  The depression and anxiety are a daily battle.  I also was in many clinical trials in the 90's and my pancreas suffered for it.  I can't work because I now have chronic pancreatitis and can get an attack at any time.  I have doctor's appointments at least every three months, and last year I had a strange fever that came out of nowhere.  I had so many tests and appointments I can't even name them all.  I often feel alone, because really no one else can possibly understand.  Many of the children I grew up with that were also positive have passed away.  My primary doctor doesn't understand and has called me lazy.  She doesn't understand that there are many times that I just don't feel good.