After being hired for a position recently I made a conscious decision NOT to disclose my HIV status. I have questioned disclosure for some time as I am not convinced disclosure is always necessary or that disclosing will alleviate burdens or stress. As a matter of fact, disclosure brings with it new issues and anxieties which we need to discuss and be aware of in order to find ways to address them and put them in perspective.
The benefits of disclosure and breaking silence include educating the public, addressing stigma, modeling how a person living with HIV is no different than a person who is negative and demystifying HIV. Disclosure also breaks down barriers and contributes to making the HIV community stronger, at least in theory.
(I am not including disclosure to sex partners in this discussion. The complexities of laws which ignore scientific developments, leaving all of us potential criminals, is a topic for another post. Today I focus on disclosure to family, employers, friends and others.)
As detailed in an aidsmap.com article authored by Roger Pebody, results from a recent study indicate disclosing or not does not necessarily affect one's overall health and well being. "In fact, some of the data suggested that having disclosed to most or all friends and family was actually associated with poorer outcomes in gay men. A more selective disclosure strategy was associated with better outcomes."
I think the same can be said for women. Not everyone will welcome us with open arms. Some reactions will be supportive, some will be outright rejection, while others will leave us dangling in an ambiguous or incongruous zone where yes means no and no means yes. We just don't know.
Those are the most stressful disclosure scenarios. When I meet with ambiguity or conflicting messages my instinct is to avoid the individual completely. When I thought I had full support, my friend/family member/colleague would surprise me with a comment that sounded something like this -"Would you mind not mentioning anything about HIV when we are with this particular group of people.?” But actually avoiding it is not so easy. Some of these individuals are my closest friends and family members. We have a strong bond and to simply walk away from them is easier said than done. I have an eclectic group of friends and colleagues' some are content to not know or understand HIV while others' reactions vary.
I started a new job recently, a position I really wanted, where I am learning new techniques, sharpening my teaching skills and generally enjoying the stimulation. I'm feeling comfortable in the "regular world". I do not want to jeopardize this in any way. I do not want to be de-hired again, or take any risks with rejection or what I described as ambiguous, ambivalent or conflicting messages.
Yes, I know there will be people who have no reaction at all, those who accept me regardless of my status. But for now I am not going to take any risks. I need the job, I need my energy to focus on my work and I do not want to sabotage my rather pleasant work environment.
Previously I had decided to disclose my status after many years as my doctor thought it would be best. It was at a time when people were dying from the illness, when there were no antiretroviral drugs available and our future was unknown. So I took the plunge and began by disclosing to my immediate family and a couple of close friends.
The reactions were mixed and I was in no way prepared for them. Initially the reactions were shock, disbelief and lots of emotions as we were all facing the possibility of loss. As time went on reactions shifted and because all of this was new for me, I was not prepared in any way to manage the changes.
Individuals who initially were supportive began to distance themselves once they had time to mull over the news. Others, surprised me and to this day remain supportive and completely understanding of my situation.
Stigma within family and friends is natural and expected. Some people want to and can be educated and understanding, others not so much.
I questioned the necessity of burdening my kids with this news and how it would shape their development. I did my best and set up some counselling sessions for the kids with a trusted therapist who specialized in HIV.
"They asked many years later if I was "cured from that AIDS scare" and I responded "oh yes, I was cured some time ago." It felt like the most appropriate response at the time to alleviate their anxiety."
It seemed to help initially. Over time and with new medications and the realization that HIV was a chronic manageable illness my kids had to shift their thinking. It was kind of like an April fool's joke - kids ,I might be dying; surprise - I am not. I do not know how I would manage in this sort of situation. I like to think I would handle it in a mature, sophisticated, understanding, empathetic and intelligent manner, but that is a tad unrealistic.
I chose not to tell my parents but a family member decided they should know. I still believe this news added stress to their lives, a sense of helplessness, a lack of understanding, in spite of attempts to explain. My parents thought there had to be someone to blame for my situation as this was their way of trying to process the news.
Anyone who is reading this and has elderly parents will understand how it is not easy to change perceptions and thought patterns. Adding HIV to the parental mix makes it more complicated and became a topic I tried my best to avoid discussing. They asked many years later if I was "cured from that AIDS scare" and I responded "oh yes, I was cured some time ago." It felt like the most appropriate response at the time to alleviate their anxiety.
The urge to be overprotective was a natural one. But the overprotective tendencies became stifling and I simply wanted to make decisions based on what I would do if I was not living with HIV.
My lifestyle was not conventional and I did travel to many places where there was not the luxury of immediate medical attention, a risk of contracting malaria, and other risks involved in traveling to places outside the developed world. I down-played the risks to my family and friends and realized there would be concern for my wellbeing even if I was not living with HIV. But the HIV factor created more stress and at times quarrels and tension.
Looking back I can say to my close family and friends it was all for nought, as I arrived back safe and sound each time. The irony is I did have a serious medical emergency here in Canada, away from home, and due to a misdiagnosis I was released from the hospital after an hour and a half with a food poisoning diagnosis when in fact I had a stroke. I used this experience to explain to those who were concerned how there is often little control over when and how health emergencies may present themselves.
Within the HIV community I have developed a sense of belonging, a connection with a small group of people I can speak to about my status. They completely understand, no explanations necessary. I lend support too and have developed a strong sense of camaraderie. Not with everyone as it is unrealistic to assume simply because we share a virus we will automatically connect on an interpersonal level. However I do advocate for our community as a whole.
Many people living with HIV are leaning more and more towards full disclosure and I commend anyone who is able to be completely open about their HIV status. I envy them. I also acknowledge the complexities of disclosure, the need to discuss them, to analyse ways to simplify disclosure into more positive experiences while strengthening our community, helping us be prepared to address disclosure reactions and educate the public about the reality of living with HIV.
Although I have made a conscious decision about disclosure the question remains: by living in silence am I not perpetuating lack of education, awareness, and not using the opportunity to make a change in public perceptions? I am, but until I get accustomed to my new job, get my dose of feeling "normal" again without anxiety and stress for a while, I will continue to not disclose.
I will evaluate how and when and if I choose to disclose. The immediate and obvious delay at the moment being - I need this job, I need to have an income. Someone has to pay the bills.