HIV Diagnosis: Where Responsibility and Opportunity Collide

detour signCounselor: “How would your life have been different had you not gotten HIV?”

Client: “I probably would have been dead.”

This is how a conversation started about 12 years ago. I was running an HIV/AIDS housing ministry, and we were starting a wellness program with the intention of helping people make the adjustment to the new reality that HIV was no longer a death sentence. The expectation was that we could help people reconnect with what their life ambitions were prior to being diagnosed with HIV and get back on that path.

However, when the person referenced above gave the response she did, clearly there was a complexity that needed to be explored further.

The woman talked about how, prior to ending up in the hospital with full-blown, previously undiagnosed AIDS, her life was spent as a sex worker who was addicted to drugs. Then she got sick, was hospitalized, and because of her AIDS diagnosis suddenly qualified for mental health services, housing, food assistance, and medical care that she did not qualify for prior to her diagnosis. This person took full advantage of these new opportunities, got herself clean, started more traditional work, and, over time, became increasingly independent and healthy.

Not everyone has such a smooth transition. Some people see the safety net that a diagnosis presents, but don’t recognize the responsibility to make positive use of new opportunities. I have worked with people who had the sole ambition of a stress-free life and an apartment they could afford. In one case, the person was never physically sick, but diagnostically qualified for permanent housing. He moved from his parents’ home to an apartment without ever having to work. Unlike many other people, there were no signs of depression, other mental health issues, or addictions. There was a system, however, that was able to take him in without ever addressing some of the family systems dynamics that were in play. He effectively became a ward of HIV/AIDS services even though he never had been sick. He saw opportunities and took them, which is certainly within his rights. The system itself, on the other hand, had little means to enforce responsibility without fundamentally changing its criteria. Over time, funding cuts have taken care of that for many.

If we are to best serve people with HIV in a way that does not foster dependency, but truly meets them where they are so we can better explore their needs and support their growth, there are things we may need to do. To start, we have to be ever diligent in checking our assumptions about the impact of HIV in one’s life. It can be devastating, and as we have seen, it can be a life-saver. It may make it more difficult to get basic needs met, but it can also make it easier—and this is true throughout the world as programs for people with HIV/AIDS are developed. Having HIV/AIDS can also make it easier to avoid dealing with deeper, underlying therapeutic, cultural, and justice issues, whereas for others it is a wake-up call.

For each person, and in each cultural context, it will be different. “Where do you think you would be were it not for HIV?” and “What were your life goals and ambitions prior to having HIV?” are good ways to explore this with each individual. As we explore these and other questions, we may very well uncover some of our own assumptions about life, disease, mortality, and opportunity, a process that can benefit all of us.

© Copyright 2014 All rights reserved. Permission to publish granted by Bradley Ogilvie, MS, LPC, LMFT, HIV / AIDS Topic Expert Contributor

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by Questions or concerns about the preceding article can be directed to the author or posted as a comment below.

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  • zara

    March 5th, 2014 at 11:40 AM

    I suppose that for some people this could turn into a time to reevaluate what their golas and dreams are and take advantage of the time that you have left.
    Sadly, there are those people who don’t have the chance to recognize these things until life throws something at them that they possibly would have never expected. They have to have a hard hit like this before they can turn things around and start over again.
    I hope that I’m not quite that stubborn, that I can see the opportunities ahead of me before I would ever have to receive a devastating diagnosis like this. But the positive thing is that there are a lot of people making ood use of this, using it as a chance to change their own lives and to share the need for change and education with others.

  • AlMa

    March 6th, 2014 at 3:50 AM

    This goes along with anything where there is a need for social services. A terminal diagnosis, homelessness, addiction…. all of these are areas where you want to help, but at the same time the help needs to be given in a way that it is not solely relied upon. If you can develop a program for creating a support ystem for these people, then that’s wonderful. It teaches them the importance of working within a unit, being able to ask others for help, and relying not on the system but on themselves and for others in their support system. You want to teach them how to create this but without them becoming dependent on the syatem.

  • Brad

    March 6th, 2014 at 10:56 AM

    Thanks, both, for the comments. One of the inherent challenges is that the majority of HIV/AIDS services are developed for those whom HIV/AIDS is the primary diagnosis in need of treatment. The fact is that for a large percentage of the HIV+ as well as at-risk groups, HIV is down on the list in terms of the clients priority, but the system and society often sees it otherwise and places the priority on HIV. I once had a client come to housing after being hospitalized for a manic episode. The reason he was taken in was because his HIV diagnosis qualified him, but we were not qualified to effectively deal with the bipolar aspect, programatically (admissions was a different department whose job was to keep the units full).

    I do think the more non-HIV specific clinicians become comfortable with seeing HIV, the more we can help clients for whom it is just one of many challenges. It’s why I’m encouraging clinicians to look at integrating the option of self-testing into practice. It can help normalize and de-stigmatize HIV in practice while still working with the client in the most holistic way possible.

  • tess francis

    March 7th, 2014 at 3:54 AM

    I have to be honest when I say that if I found out that I was HIV positive, I wouldn’t have thoughts of helping others, only of what I could do to win this fight for myself.

    I realize that this sounds incredibly selfish, and I have to look at it as a what if, not as a reality. Maybe I would feel differently if this was my diagnosis, or if I was actually in that position and then some other life event happened. But where I am right now, I am not sure that I would use it as anything more than the opportunity to fight for me. How can you when you have been given news like this?

  • Brad

    March 7th, 2014 at 9:36 AM

    Tess – I don’t think it’s selfish at all. It’s where you are, and not at all uncommon. Your last comment, however (“how can you, when you have been given news like this?”), is exactly the kind of thing we must always be diligent about. We have to let the client tell his/her story about having HIV, and not make assumptions and even projections based on our own expectations and experiences. I have learned that when we find ourselves thinking “How can they react in any other way than…”, we really have to check ourselves.
    I do think it’s good for you to consider how you would respond, but own that as your response, not make it your client’s response.

  • Juliette

    March 9th, 2014 at 6:19 AM

    I find it heartbreaking and courageous all at the same time when I witness actions that are so selfless and giving. To learn that you have a potentially life ending disease like HIV but then tunr that into a teaching element for others is outstanding, yet I am not certain that I posess the bravery in me to do the same thing if I was faced with living with HIV or AIDS. It can be quite moving to hear these types of stories, and at the same time I wonder where these people who are sick, who know that there is no cure, find that courage to speak to others about prevention and their lives in general. The voices are so strong that they demand to be ehard, and often make the most impact on those who are the most at risk. I would suppose that this is where the hope springs from, the hope that they can prevent the further spread of this disease which has no known cure, and to help others learn that there are other choices, other life paths, ahead for them.

  • ned

    March 11th, 2014 at 3:59 AM

    was just recently diagnosed and want to share my story but right now it all still feels too raw, too surreal to do that so openly… maybe with time, just not yet

  • Brad

    March 11th, 2014 at 1:36 PM

    I have found, Juliette, that people find strength through adversity – often to the depths they didn’t know they had it. And yet, I have seen people completely knocked by diagnoses. There are so many factors but essentially I find it all boils down to storytelling and the extent to which we want to write our story or have it written. Ned – please feel free to reach out privately if you would like to talk about this. I’ve been living with HIV for 2+ decades, and know it’s still not easy when it first hits.

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