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Facing bereavement in HIV work: why is it so hard to say goodbye?

Wednesday, 07 December 2016 Written by // Megan DePutter Categories // Megan DePutter, Spirituality, Living with HIV, Opinion Pieces

Megan DePutter on the bereavement that often comes with HIV work: "We are left, without ritual, without comment, without community, without closure."

Facing bereavement in HIV work: why is it so hard to say goodbye?

I have been nervously anticipating this year’s World AIDS Day. It’s always a busy time of year for those of us who work or volunteer in the field, and it’s always one of mixed emotions, for many of us. But this year’s event is particularly unnerving to me, bringing a mixture of anxiety and relief. That’s because World AIDS Day is the only socially acceptable time for me to acknowledge, recognize and maybe even grieve the lives of people I knew, and cared about, who were living with HIV and who passed away.

A few months ago I received the news that four people that I used to support had died. ‘Used to support’ is the best way I can describe it. They were ‘service users’, ‘clients’, ‘participants’ - more accurately, they were people living with HIV who took part in my programmes. But that description tells of a cold, contractual relationship where one provides a service and another receives. So that doesn’t tell the whole story.

I’ve blogged before about how I feel my work in HIV changed me. In Positive Prevention a lot of the activities that I led were meant to foster empowerment, community development, and resilience. It wasn’t so much about giving people skills as it was about supporting their own development and goals, to feel more confident and have the space to contribute to their own communities in their own ways. The more time I spent in the role, the more I got to see what this meant. I saw a level of commitment to self-growth and a desire to help others, I saw compassion and empathy, I saw dogged resilience despite obstacles. I saw people who were determined to make meaning out of difficulties and people who were able to contribute, in ways small and profound, to the lives of others.

"Could you work closely with someone for five years, getting to know them, supporting them, building a relationship with them, and not care that they have died?"

In my programme we did lots of things: there were regular training courses in the evenings, peer-led workshops, healthy living workshops, trips, retreats, speaking events and social events. Some of my strongest memories are around the pot-luck suppers we had at a church on World AIDS Day, to help people access friendly support in an informal setting on an otherwise difficult evening. And although as workers there are always boundaries, there is, of course, also genuine feelings of connection and, may I say, friendship.

When you enter into this work, you make yourself vulnerable. Don’t get me wrong, my vulnerabilities are dwarfed in comparison to the vulnerabilities of the people who access the services; after all, they are asked to give much more - they open themselves up, they talk about their past, they disclose their HIV status but also much, much more. They explore their own opportunities for growth, they risk trusting someone new, they get to know new people and make new friends - all of that takes courage. But for us workers, we are vulnerable too. We open ourselves up to care about the people we support. And we do that knowing that what they reveal to us may be painful; learning about their pain, the injustices done to them, can be painful. It can be painful to see them relapse, or struggle, or disappoint you. It can be painful to watch when they suffer. And it can be painful when they die.

Watching the triumphs and successes of the people you support is extremely rewarding and exciting. You want them to do well. But feeling that way necessitates that you care about the people you’re supporting. This might sound obvious but I find that sometimes people are startled by the fact that we actually give a damn. A few months ago, when I found out that four people I had supported had died, I expressed grief and heard the common refrain ‘you’re sensitive.’ I think it was actually meant to be a compliment, and it was intended to be supportive. But it bothered me. Am I just being sensitive? Are support workers not supposed to care? Could you work closely with someone for five years, getting to know them, supporting them, building a relationship with them, and not care that they have died?

That’s the odd thing about being in this role: empathy, compassion, sensitivity - all of these things are imperative to the work. But we don’t seem to have the right to mourn someone’s death.

But there are other restrictions too. Namely, confidentiality. Right now I would love to be writing a blog post about what made those four people special. I could tell you the things I noticed in them, their strengths, and gifts, that were probably often dismissed, or more likely, missed entirely, but were so abundantly clear when you gave them a little time, a little attention. I could tell you why they made me think a little bit differently about life, and what I learned from them. I could tell you what they gave to others. But I can’t, because I cannot reveal anything about them due to the need to protect their confidentiality. Confidentiality is, as I often say, of utmost importance. But for us workers, who lose people we care about, this also makes it hard. Because we can’t talk about it, can’t connect with others, can’t attend funerals. We can’t always have the details of why or how somebody died, and are left wondering - but why? But how? And if we do know how someone died, we can’t protest an unjust system that let them die prematurely. We can’t do anything, really. We are left, without ritual, without comment, without community, without closure.

In August, I threw four stones off a tall, tall cliff in Lion’s Head, Ontario, into the sparkling blue-green water of Georgian Bay and I thought of the four individuals I knew. That was my good-bye.