So, you have been diagnosed with HIV or AIDS
By Marc Peterson, Director PSA Oregon Chapter

To begin with, let me tell you how deeply sorry I am that you have been diagnosed with HIV or AIDS. As a person who is also HIV Positive, I completely understand how terrible this news has been. It takes most people months and even years to come to grips with knowing they have this incurable disease.

Regardless if you wanted to or not, you have joined the ranks of 36 million other people who have HIV or AIDS on this planet.

There are over a million known cases right here in the USA but realistically the number is probably triple that known number, as people here in the US just aren't being tested regularly. Already in the USA, there have been over a 600,000 deaths directly caused by the HIV or AIDS epidemic.

To put this in perspective, HIV and AIDS are consistently gaining ground on the worlds Cancer death rates every year. Not to disparage those friends or family members who might have died from any form of Cancer, but if cancer is now caught early enough most forms of it can usually be fully eradicated and cured in many cases. Unlike Cancer, HIV or AIDS has no cure and cannot be 'eradicated'  by radiation, Chemo or other regimes. There is no known cure.

On a positive note, brand new immune boosting HIV anti-viral drugs have been shown to keep the virus level down. Regardless of the new anti-viral drugs, HIV and AIDS damages a persons body and its immune system at a very rapid rate. Significant damages to your body and internal organs are caused literally within months and years after becoming infected with HIV. Remember that HIV is the virus that leads eventually to AIDS. Sometimes if your counts are so poor when you are first diagnosed, your condition will be labeled as actual AIDS. Usually if your blood test comes back with a very high viral load and a very low T-Cell count at or below 200.

It takes about two years of heavy duty anti-viral drug use to  bring your immune system back just a mere 100 point's. In comparison, a healthy immune system is between 1200 and 1500 and if you are diagnosed with AIDS, your t-cell count would have to be 200 or lower. At this rate, a person who is diagnosed and starts drugs early, stands a better chance of regaining a portion of their lost immune system.

Believe it or not, just a short time ago in 1998, we were seeing friends who were diagnosed with HIV or AIDS, die just a few years later of complications. I lost my first friend Jacob, when he was only 25 years old from AIDS. My good friend Cory, who was straight, married and had a cute little girl, died the very next year.

Had they got tested earlier, without waiting for them to become ill and have to go through a battery of hospital tests, that would have been alive today.

Basically, the prognosis for someone being diagnosed with HIV or AIDS was not good just ten years ago, most of those who were diagnosed back then have already died.

As a result of new viral load suppression regimes that began to come out over the last 5 years, people with HIV or AIDS can live for 20, 30 or 50 more years (if it was diagnosed early and you get your butt on treatment asap).

The point that I am attempting to make here is that this is no 'cure' for HIV or AIDS. We have merely only made 'good attempts' at  suppressing the disease, but it is still there.

Now, back to you and your diagnosis. I want you to know that we here at the Positive Support Association understand how terribly shocking this news has been for you and our thoughts and prayers are with you during this difficult period in your life.

You may be surprised to hear it, but I want you to know that it is 100% okay to feel totally devastated about your diagnosis. Along with all that devastation comes some really intense emotional feelings - all of which is pretty normal and what each of us have already gone through.

In learning the news that you are have been infected with the HIV virus or have found out you have AIDS (Acquired Immune Deficiency Syndrome) you are probably feeling pretty terrible right now. If you are like some people, the news might have been a total shock to you.

How you became infected with this disease is a very private matter and even for me, it is still tough for me to even talk to you about any of this now.

When I was diagnosed a few years back, the last thing I wanted to do is go around announcing the news about my disease to my friends or family. I felt like I was very much alone in my diagnosis and truly believed that I was going to have to face this all alone.

I later realized that by keeping totally secret about my illness was probably the biggest mistake I could have made. I needed help and still do to this day.

Because I don't share my feelings openly, even with my partner, it was a few years before I actually came to grips and started to make positive changes in my life. Had only there been a group like the PSA back then, possibly I would have used my remaining time more wisely.

There are so many HIV groups and Agencies (both private and Government) that I believed are failing to meet the needs of people living with HIV or AIDS, that myself and others who were then disenchanted came up with the entire idea for the Positive Support Association. We did this in hopes that others won't be lost and forgotten like we were.

In the months and years after I was diagnosed and actually begin to become sick and ill from HIV and it's complications, I found (as others had) that research and locating HIV resources here in the Pacific Northwest, was a difficult, if not impossible task. I didn't know any other HIV Positive people and didn't have a clue as to where to look for help. Finally, I was brave enough to go meet with CAP and Partnership and ask for help, unfortunately, my questions seemed to be met with blank stares. Both of these Organizations seemed not to understand me or my current needs. I am happy to report that a few things have greatly improved for those two organizations, but there are still far too many HIV Positive people falling through the ever expanding cracks.

Because I was forced to undertake all of my own search for HIV/AIDS resources on my own, I have learned through trial and error of how to get the proper services and resources that we positive people need. Because of the lackluster response I received from local HIV/AIDS Organizations, I have vowed to help others who feel like they are in the same situation. Part of the PSA's commitment is to provide 'real' answers to questions, without anymore blank stares.

In late 2008, I founded the Positive Support Association with these and many other goals in mind. My team begin to work on putting together the PSA website and the On-line resource guide you will find here. Hopefully, our leg work will assist you and others in making better decisions about your HIV care than I once did. The PSA On-line Resource Guide is updated about ever other week and includes updated, fresh information and resources. Our goal is to help you get better information about your disease and make you aware about what free or low cost HIV/AIDS programs and Orgs that exist in your area.

Looking back to just a few years ago, there were many programs and care options that I could have been using all along, had I only gotten the proper case management, care and direction I actually asked for.

Had someone simply 'been there' to support me, I know that I could have been saved from almost medical bankruptcy and deep and lasting mental stress over my degrading situation.

As you read through my story as well as the actual stories of others here on the website, please remember that there is help and guidance available to you right now. All you have to do is pick up the phone or email me or my Positive Support Staff.

One of the most importantly things I wanted to do in setting up the PSA website and Peer Program is to allow people (newly positive or oldie positive folks) the ability to come to a private, secure place to research and learn about their disease and hopefully do it without running into walls and barriers that seem to be ever popping up.

By now, you probably have already figured out the second purpose of the PSA is; it is to help direct and guide you to the proper services you need, while supporting you along the way.

In a perfect world, this 'guidance and support' are supposed to be the job of your assigned HIV Case Manager (as provided to you by either from Oregon or Washington State, Partnership Project or CAP). However, it seems that many Case Managers are failing in their work and worse yet, are continuing to let down their Positive clients in this area. When pressed about this exact issue, Case managers and their employers are first to whine about how they are overworked by the caseload of HIV and AIDS Positive clients. Having worked in a fortune 200 Corporation and in County Government, I know when I witness poor time and resource management.

HIV Positive clients, their partners, spouses and caretakers are constantly reporting to us that they feel like they have been completely discarded by their assigned case manager. We are hearing dozens of monthly complaints about how phone calls or emails to Case Managers are rarely, if ever returned. The Case Managers themselves have only preliminary training and are most 'just fresh out of school' and are not themselves HIV Positive, so there is a huge rift growing between these Case Managers and their Positive clients.

Looking at the 'support' problem from the outside allows the PSA team to stay focused on helping those that feel lost or forgotten, or those that are truly in need. Some changes in leadership at some of these organizations have been a very positive step forward in reducing the number of client complaints, however, they still exist, even in 2010.

With all that in mind, we are trying our best to be different.
Unlike many of those Organizations, nobody here at the PSA is going to make you talk about your disease or share your news with anyone if you don't want to. We hope to build trust through actual 'example' as well as by our support, which always results in developing deep and lasting friendships. Our goal is to help build up your 'support system'.

Furthermore, nobody is going to make you sign any client contracts or agreements to get our support or guidance. Nobody here is going to require you to report anything to anyone. Your privacy is guaranteed by our team.

For most people, getting the news that they are HIV Positive is about the worst thing that will ever happen to them during their lives, so it is common for any newly diagnosed person to get a little freaked out about all of this. It's pretty normal for people to go through a long period of denial and disbelief. If you are like me, you are probably beating yourself up over this news and my be pretty depressed right now. These are all normal responses and you are not alone in your feelings right now.
 
Many newly diagnosed people I have worked with are able to take a few days off of work and  'get centered' and figure out their own plan of attack or action, some others don't have this luxury.

Everyone in this situation should take some time off and give yourself a 'grieving period'. Sometimes a few days isn't enough, so take the time that is appropriate for you, but involve someone if you are up to it. Right now you should have someone to share your feelings with. We are here to help you if you don't have anyone.
Many people who have shared their diagnosis stories with me, just go on with their day to day lives and don't take time to grieve their own situation and this might be okay for some, but I think it's not very healthy to do.

 
For me, when I found out, I was in such a blur, in shock and in disbelief, it wasn't until this past week (several years later) that my buddy told me that I actually went back to work right after hearing the devastating news.

As I recall that day now, I do remember how horrible I really felt. I remember shutting the door of my office and just breaking down crying for like an entire hour. My boss, who is a great gal, thought someone had died. I never told her what really happened to me that day, and never fully disclosed I was HIV Positive, but hopefully she understands now.

Going right back to work after receiving your test result might seem the 'tough and strong' thing to do,

but in fact, it was not a healthy reaction for me to take.

It might be okay for you to try and bury your feelings by piling on work programs, but it is also okay to be an emotional mess and break down and cry. Nobody will look down on your for choosing your path, because after all, HIV and AIDS are both incurable diseases. There is no cure for either disease and regardless what the Medical Community will tell you, in one way or another, they both are terminal. True, perhaps not this year, maybe not in even ten years and  maybe not even thirty years, but complications to these diseases kill millions of people worldwide every year.

So, in summary, remember that not everyone deals with traumatic information exactly the same way.

If you are wondering if what you are going through is normal, take a minute or two to read through other people's stories and read how they dealt with their diagnosis here Stories of Others

The following is a cut n paste of our 'Just Diagnosed Post Cards' found in all Portland Doctors Office and HIV Testing Clinics.

You should have received one after you got tested. It's written by real HIV Positive People and under the direction of a leading Portland M.D. HIV Specialist.

Hopefully, you were not alone when you got tested as it is always a good idea to have some sort of support system in place when you learn any news of this nature.

Having your partner, best friend or even a family member by your side when you get your results can make a huge difference in how you will deal with the news. We understand fully that getting any STD test, let alone HIV testing is a very private matter, but you'll be happy somebody was there holding your hand.

If you didn't have anyone there and don't feel like you have any support, don't feel alone, everyone here at Positive Support is here to help by giving your support and mentorship, all you need to do is just ask.

You can contact me or my staff anytime by writing pridelabs@gmail.com or you can call Day Phone number at 503-278-8992 to get myself or any other staff through our National Hotline at (928) 569-1950

(its a Phoenix area number, but our offices are in in Portland, Oregon) and myself or one of my trained Positive volunteers will call you back as soon as we can.

So your initial test result was Positive

If your test result was 'positive' for HIV, it will need to be confirmed by a getting a full blood test done right away. There are such things as a 'false positives' however, these are rather rare now a-days.

If your HIV test was performed by using a rapid test or one of those twenty-minute tests, chances are that you are going to have to confirm the test by going to a Doctor who specializes in HIV care and getting your actual blood work counts done. This will also serve as your baseline testing and will help whoever you pick to be your HIV Doc, know what your counts look like. Remember, you might not have to go on anti-viral meds for many years, or your counts might suggest you start right away.

Why use a HIV Care Doctor and not your Family Doctor

It is very important for you to pick a Doctor who specializes in HIV Care. Most of the HIV Care Doctors on our list are actually primary care doctors as well, so you aren't going to be stuck paying CO-PAYS for a 'specialist' every time you make an appointment. Most HIV Care Doctors are co-mingled with regular doctors in normal doctor offices, so nobody will know you are seeing an HIV Care Doctor.

It is my opinion that you should always pick an HIV Care Doctor over your existing family doctor as most family Doctors just are not up on the specialized HIV medications and care you are going to need.

You cannot afford to be their 'teaching' case.

You don't have to be afraid of your insurance dropping you anymore as it is illegal in most areas for them to pull that stunt anymore. HIV medical care and costs are pretty much standardized. Many insurance companies don't even care if you are HIV positive or not.
 
DO NOT DROP YOUR LIFE INSURANCE, even if you lose your job.

There are Broker Companies that will 'buy out' your policy for about 25-65% of the value. People with terminal illnesses can sell their life insurance for a portion of its face value through a process called viatication. The money you get can be used to catch up on bills, prepay final expenses or take a trip to the place you've always dreamed of - in other words, anything you want.

You cannot rely on getting SSI DISABILITY if you get sick

Even if you get ill and decide to apply for SSI Disability, Social Security and a local State Doctor will arbitrarily DENY YOUR CLAIM about 99% of the time. This doesn't mean you shouldn't apply early, even while you are healthy. See the SSI Disability Site and or contact a SSI Disability Lawyers for a free consultation. Check out our On-Line Resource Guide for help finding an Attorney in your area.

 MAKE SURE YOU FILE your SSI DISABILITY claim (online if you want to) as soon as possible if you lose your job or income because of your HIV or other illnesses. Even if your 1st attempt gets denied, don't give up. Appeal it within the time allotted and go again. Even on an appeal, your claim will usually get denied and you will be forced to go get an Attorney and file for an actual SSI Disability Hearing. Hopefully, after many months and usually about 2 to three years (by which time you are really ill, poor and broke) you will get your benefits.

SSI Disability will back pay you from the date you filed (less 6 months) if they find in your favor. There is never a charge to get an Attorney, they ONLY get paid if you get paid. They normally will not charge you if you lose. The first year payout may be less if you had the income of your Life Insurance buy out, but if you are sick and losing your home and the life you built, you are going to have to have something to survive on while fighting with Social Security.
Basically, it is my opinion that you cash out your life Insurance if you don't plan on keeping it OR you lose your job and cannot make the monthly payments. Do not let your life insurance lapse or anyone take it away.

Now that you are HIV Positive, there are hundreds of awesome programs funded by the Ryan White Care Act. These will actually pay all your insurance premiums (Medical and some dental only) and even co-pays (including medication) if you meet the programs criteria or lose your job. Don't worry about this 'insurance need aspect' as you will be taken care of.
Now, back to your second HIV test; it is really the confirmation test and will help make sure you and your Doctor really know where you stand. This confirmation test requires a full blood draw and lab work up.
Getting the second test done by an actual HIV Care Doctor and a lab is something you are not going to want to do, but you need to know for sure if your initial test was accurate or not.

It is possible you somehow got a false positive, however, even the cheap field tests are pretty accurate now a days, but you will want to know for sure. Getting the second test done by a HIV Care Doctor will also help you figure out where you stand in regards to your T-Cell counts and Viral Load right from the beginning. Knowing all these facts is pretty scary and in the midst of all the emotional drama you are going through, it's a miracle that most people do as well as they do, during this trying period. Just remember, being infected with HIV or even AIDS is not an actual death sentence anymore, with treatment and staying healthy, you can possibly live to a very old old age.

Can I wait awhile, I'm still trying to absorb all of this?

There are some people that try to run and hide away from their disease, but one thing is true, that by putting off your HIV Care because you are afraid is just going to compile your problems down the road.

Learning you have an incurable disease is a blow to the psyche and to the spirit. All sorts of feelings will surface over the next few days and even weeks.

I was particularly lucky that I had my buddy by my side when I was diagnosed. We both had just got tested and thankfully, his test was negative, so I went from a super relieved high note, to a crushing low note when my test came up positive.

Again, I cannot stress this enough; If you get tested have someone there. If you were all by yourself, hopefully your Doctor or Care Giver helped you by listening to you and gave you some direction and guidance. Hopefully they sent you here, to the PSA website. Either way, it is really important for you to share your diagnosis with a best friend or loved once you feel up to it. You don't have to make a big scene about sharing the news, but if you let someone in, it will definitely help you get through the next couple days and weeks, but only if you allow them to help you by listening and being there for you.

It took me about a year to finally get over having unscheduled post traumatic episodes in regards to my own HIV diagnosis, so don't expect that you will get through this with out some sort of emotional feelings.

I promise you that things will get better and time does help lessen the blow, you just have to give it a little time.

Over the next few days, you will go through a whole gambit of emotions, including feeling sorry for yourself one minute and being pissed off the next. Your feelings of low self worth or that you are an unworthy person is pretty par for the course, but UNTRUE.

Since I was such a germaphobe, feelings of intense yuckiness inside me made me often sick to my stomach when came to the realization that I had something replicating in me. That thought often freaked me out, but I got over this and so will you.

You are probably still feeling pretty shocked right now and most likely the news that you tested positive for HIV hasn't still sunk in yet. We here at Positive Support want you to know that we are here.

You can learn more about the PSA and what we do by clicking on the tabs above.

If you want to share you experience about getting tested & diagnosed, please write us and we'll help you get it edited and published on the PSA website. All stories are anonymous and strictly private.

Our Team of Positive People Understand

Each of us here at the Positive Support Group has an intimate knowledge of what you are going through right now.

The potentially devastating news that you or even a loved one has become infected with HIV can seem a terrible blow to the mind, body and spirit.

Just remember it is quite normal to begin to question your entire belief structure right now. Sometimes it's as if you have been dropped into an intense realm of despair, but I promise you that it will only last a little while.

It may sound like a hollow and old cliché' at this point but it is true that things will return to some 'normalcy' in a short amount of time.

There is an entire community waiting to support you and who have already experienced much of turmoil you are now facing.

You are Now even more Relevant

You are relevant and even though this whole situation sucks, and we are here to help you in your grief.

We are here to help you even if it is simply by sharing on the PSA website the stories of others who are similarly struggling with the disease.

There is always hope and there are always answers to be found in the most seemingly dark of circumstance.

All we can ask you to do right now, is not to give up. Even if you are too embarrassed to ask for help or seek out a counselor, you need to know that you are not alone.

Remember, as you go through the next week or months, it's natural to breakdown and cry

It is okay to breakdown and sob right now and we all understand how you might feel lost and broken. Your mind is likely shutting down in an attempt to not deal with the fact you have been diagnosed with an incurable disease.

While it doesn't give you much comfort, these feelings are absolutely normal.

My guess is that you just want to hide away and especially not be seen in public.

Now is a good time to take a day or two off from work to grieve and sort through the torrent of emotions you may have never thought you would be experiencing.

You may find yourself cutting off all contact with your friends and family all because you feel ashamed.

You might feel your diagnosis is a dirty little secret that you intend to bury deep within rather than face it.

Feelings of guilt are often common and can make you feel dirty, both inside and out. Depending on your spiritual background, you may even begin to feel immoral because you 'got the gay disease' and the whole experience leaves you guessing about your souls worth.

Many people who are diagnosed with a terminal and incurable disease often report PTSD (Post Traumatic Stress Syndrome) 'like' symptoms for weeks, months and even years after receiving the news. It is okay to breakdown and cry at times as this is absolutely normal and expected.

Nobody can control the waves of emotions completely nor should they try.

No matter whether you feel you are the stoic, suffer in silence type, or a more empathetic sensitive soul, the emotional impact affects all equally and at varying degrees of intensity.

Over the next few days, weeks and even months, you will try your hardest to mask many of your feelings and attempt to forget about your disease. However, as careful as you are to suppress the facts in your mind, the blinding realization of your disease will always come back at you.

For me, the emotional roller coaster was pretty intense. I would be sitting at my desk at work and trying hard to not think about my disease or my overall condition when out of the blue, the realization of my disease would come crashing into my mind and I would find myself breaking down for a few minutes. Thankfully this never happened in front of others.

My boss, who was female and very intuitive often heard me having problems and asked me many times what the problem was and if she could help.

 She was fine with my sexual orientation, but I just wasn't ready to tell her the rest of the story.

I guess I was relieved when I was hurt on the job (unrelated to my HIV disease) and went off on medical disability until they replaced me a year later.

Nobody at work ever found out, or at least not that I knew off.

You May Need Help Now

You need remember that regardless of what you think or feel at this point, that your story is not unique, it is not new, it is not anymore fantastic or horrific than anyone else's story. You are not the only one who is going through or has been through this terrible process. There are people who really know the emotions, pain and isolation surrounding a diagnosis such as this and I hope if nothing else you will realize that you are not alone in this.

You may not want help, you may not think you need any help, but you really do need help! You need immediate help and counseling even if it is simply peer to peer or friend to friend!

Even though you just got slammed with some pretty terrible news, you are going to need to be tough right now. For those that are really having a challenging time, where depression is rapidly settling in, it is extremely important that you get assigned a peer group member or mentor to help you through this entire process, or talk to a licensed Social Worker. They will help you get started in managing and controlling your disease as soon as possible and be an additional source of strength if you will let them.

I came out gay years ago, how can I come out positive as well?

While HIV is no respecter of persons, there are many people who happen to be gay or bisexual who are afflicted with this disease. Gay and Bisexual people have already been forced to experience a 'coming out� to friends and family over the course of their life, but now they have the even greater challenge of coming out positive as well.
It can seem like a double whammy to both the infected person and to those loved ones around him or her.

Whether it is because of feelings of guilt or shame, denial or another motivator, many newly diagnosed people rarely reach out to their family or friends with this news.

By not sharing, we cut off our primary support system and this is not healthy.

No matter if you found out because you became very sick and were tested at the hospital or clinic or you decided to go get a random HIV test and it came out positive, you are most likely in shock right now and want to find some information about your diagnosis and about how to proceed in the management of your disease.

Unfortunately, no matter how terrible and earth shattering your diagnosis news was, you have to step into a survival mode and begin to manage your disease immediately. You cannot allow this disease to manage you, even for a few days!

Ninety percent of newly diagnosed cases have T-Cell counts that are fairly high and medications and or care will not be immediately needed, however, you have to realize that no matter how healthy you feel or how new the infection may actually be in your system, a seriously rapid and progressive virus is attacking and killing your entire immune system and this rapid attack is also severely affecting other body systems and organs.

Hives, rashes, night sweats, fevers, colds, flu, bronchitis and pneumonia are possible right off the bat, even if you have a 'recent infection'.

In summary, it's ok to be pissed off, it's ok to cry, just remember that it is important for you to learn about your disease, even though you may not want to even think about it right now. If you need advice, just email or call one of our peer to peer volunteers and we'll help!

Warning

While we feel this is important information, remember that most of the info above is written by an single author with reports and opinions adding in from other HIV Positive individuals. The info above does not reflect any actual medical facts and should not be construed as medical advice. Please consult your HIV Care Specialist for more information.

IF YOU NEED HELP AND WANT TO CHAT, Call one of our staff 10 AM - 10 PM Any day of the week (number may or may not be answered as it's directed to one of our staff at home, but we'll take the time to chat, just ask) or leave a message and we'll call you back a couple hours later SUPPORT  (503) 278-8992