Words matter…they can inform or destroy a new, HIV positive youth.

Words are powerfully influential to a person who has just been newly diagnosed as being HIV positive.  The story I’m about to tell you is happening right now to a young individual man named, Nick.  You can also follow his daily life as he navigates this new world at http://livingwithnotdyingfrom.blogspot.com .  But the story I’m about to tell you is about those who work for HIV Community Based Organizations (CBOs) in helping those infected with HIV.  This is really a story about the after effects of words by case workers who can inform or hurt the very same people they should be helping.

Nick found out his HIV status just a few weeks ago. Devastated by the test results from the Health Dept, Nick was emotionally wrecked and fragile.  But he quickly sought the maze of HIV services through CBOs and AIDS Service Organizations (ASOs) in short order.  Many ASOs and CBOs will assign a case manager to the client to navigate them through their services or agencies they collaborate with.  A majority of case managers are not HIV Positive themselves but have been in the service provider community long enough to know all the providers of service.

Nick recently sat down with a case manager at a CBO who began the “intake” process of collecting data in order to process them through all the services available.  Nick was so concerned for his health, not knowing how his life will change, how much  medication does he have to take, what infections may be in store for him and a host of other questions all surrounding HIV and his new reality. For a newly diagnosed person, the most excrutiating part of your new HIV status is getting the blood work done to find out your HIV viral load and the t-cell (helper cell) count.  Everything in your life comes to a standstill as you fret the blood draw and waiting 2 long weeks before they get the results.

So when Nick was asked by his case manager “What if when we do your blood work it comes back with a t-cell count under 200 and your a diagnosed with AIDS?”, in his mind his life came to a screeching halt.  AIDS? Nick has only been focusing on HIV…but AIDS?  The next few hours resulted in a most devasting series of emotional roller coaster for Nick who became distraught, outbursts of tears and anger, and hopelessness.

I spent the next several hours picking up the pieces.  Nick was an emotional wreck and couldn’t even finish completing work at his job.  My first response was complete anger toward the case manager, but my focus had to be getting Nick put back together for a bit.  I started by apologizing for the way the case manager handled Nick with a callous questions that should have never left his lips.  Just by looking at Nick, one can tell he is in relative good health, eats fairly well, doesn’t seem to do drugs, and maintains a fairly healthy lifestyle.  So why would a case manager even utter those words?

An a-symptomatic HIV positive people with t-cells over 200 who maintain their health and well-being generally do not advance to AIDS in the United States, today.  In fact, the death rate according to the CDC has fallen to 6% across the nation.  So why would a case manager ask a questions like that of a very young and emotionally fragile person?

I’m angered by the fact that the case manager failed to put the client’s (customer’s) well-being, mental-health or personal concerns above routine, protocols or data collection.  Using common-sense would have precluded anyone asking that question with the knowledge base we have accumulated today simply by just looking at Nick.

Was the case manager over-worked, over-loaded with cases, not HIV positive and unable to relate or some other bias that prevented the case manager from putting compassion ahead of process?  Has the case manager been working too long in this industry and forgot the needs of the client?  Has the questions become so commonplace that clients are seen as a class of people instead of as individuals?  What changes are needed for “care” to be restored into case management services?

At the Foundation, I work with Nick several times a week. Concerned with his inquisitiveness to learn about his well-being, to take charge and to make real world life changes, Nick is always the first priority.  As a fellow-HIV positive person with 26 years of survival, I remember my first few weeks of getting the bad news.  I, too, was emotionally numb and hyper-sensitive to emotional swings.  The difference…in those days it was a death sentence.  Today, with all the advances in HIV science, the words from a case manager can inform or destroy.  Luckily, Nick has someone here at the Long Beach AIDS Foundation to listen and to guide.  When for a moment a few days ago, Nick quipped about “stepping in front of a moving car”, at least some of us with compassion was there to give words that mattered.

While I may not be “P.C.” in talking about other providers of services and their lack of delivering care, I am here for people like Nick.  So, case workers, heed this story…if not for your clients then a least for all those who just need someone to listen.  Stop. Listen with your heart. Speak from your heart. Give guidance as if every word counts. If you can’t do that, please leave the business so the rest of us don’t have to pick up the pieces.