What creates “community"? This is a question that was on my mind the other night at AccolAIDS, as I sat surrounded by warmth of spirit, laughter and fantastic people at BC Persons with AIDS Society’s fundraising event. I was so happy for the people who were nominated for their work, and tickled that some true friends got to take the stage and speak about what they do with amazing dedication. What I saw in that room was a mix of PWAs, health care providers, pharmaceutical reps, donors, and other community folks who are both paid staff and volunteers. This mix of people and passions creates supportive, kind, educational nets that the weary can fall into when necessary. Nets that provide firm enough footing to take another step. Nets that provide a wall to back up against when you need a vantage point for perspective.

The evening was a celebration of the work that’s been done and it was also a celebration of what is possible when we work together. In talking with a friend afterwards, she commented on how it must be difficult for non-profits that have to “duke it out” for funding pots, and particularly in these economic times. There’s opportunity for groups to get testy, sure, but I don’t see it if it’s happening. That’s one of the amazing things about working in this HIV community.

There really has been an effort amongst organizations that services aren’t unnecessarily duplicated, and I think that’s part of it. Organizations have evolved and there’s been consistent effort to create opportunities for groups to get together and share information about what they’re doing so that work is cooperative and comprehensive. There are local gatherings like the Community HIV/AIDS Committee, Women and Children Committee and the provincial efforts of the Pacific AIDS Network, which not only helps organizations to connect and share resources, but also helps to encourage PWA leadership skills development and provide professional development support.

The people in this community care about what happens. I love that.

Before I sign off, I’d like to send a special shout out to Monique Desroches, the recipient of the Kevin Brown PWA Hero Award. Monique has been an advocate at local, provincial and national tables on behalf of women. She’s currently Co-Chair of our Board, and her passions include housing access and microbicide development. Congratulations Monique!! For a complete list of AccolAIDS winners, visit BCPWA. 

- Janet

When I started in this work 16 years ago, there were few treatments and little hope. But people are resourceful thinkers, and alternatives to medicine were hot. Meditation groups, yoga, and the power of positive thinking were just a few things that were embraced. Having a life threatening illness that often meant a rapid death with little help from Western medicine challenged people to get their minds around these different approaches. For some it meant getting clean from drugs or alcohol, for others it meant looking at unhealthy relationships and deciding to leave them. Through these changes, there were people who came to the notion that “HIV was the best thing that ever happened to me.”  But there were also those who didn’t reap the perceived benefits of learning they had HIV.

Louise Hay’s thinking  was popular in those days. Louise Hay was writing about the connection between mind and body, implying that you could heal yourself from a disease like cancer. Not everyone read her books, but the ideas of her books floated in the air and took weight in conversations. People felt the possibility was there. 

“I hate Louise Hay,” spat a support worker one day as we debriefed.
“Why?”
“Because her philosophy of you can heal your life just adds to the guilt that PWAs have if they can’t.”

And he was spot on.  There were those who plunged further into drugs and alcohol, and lost any hope they’d ever have a healthy relationship because HIV would keep them trapped (abusive partners often helped reinforce this notion). And there were those who tried like mad  to heal their lives and got sick and died anyway.

I see echoes of that in this day and age of HIV being hailed as a “chronic manageable condition” for those who are on treatments (and not everyone is, but that’s another story). I’m not dissing treatment by any means, but it hasn’t made things manageable for everyone. I was grateful to see a recent blog by the smart and funny Dr. Bob to this effect. Dr Bob, himself HIV-pos and by his own admission very privileged, highlights some of the hefty challenges that HIV still brings, both physical and emotional.

How people speak of their illness can be influenced by language. I thought of this as I read Judy Segal’s piece in the Vancouver Sun about being a cancer survivor who wasn’t so sunny about her diagnosis. She wrote, “If, as a person with cancer, you violate the code of optimism, or if cancer somehow failed to improve you, you’d better be quiet. So I thought I’d better speak up.” She expresses a need to be honest about not feeling positive at times, and feeling pressured that she wasn’t keeping up the optimistic narrative that those diagnosed with cancer are supposed to have. It so made me think about those living with HIV.

“I reject a survivalism that seems to blame the breast-cancer dead for not trying hard enough,” wrote Segal.  An echo to my support worker friend’s lament that made me nod as I read and sipped my coffee. 

I’m with the optimists that say you can change your attitude about things and that in itself can change your overall health. Optimism is important. But it is one of many avenues a person might travel in a day when dealing with life changing diagnoses like HIV or cancer. A presumption that a person should always make the best of it is like putting a bearing rein on horses that holds their heads in place and can inhibit them from putting their heads down into hard work. It’s not the best support we can offer. The best support is to listen to what’s happening in the moment. 

-  Janet

“Our gender (as transgender and transsexual people) is … invalidated, insulted, and hated. We are denied personhood because our gender is not heteronormative enough: Proper men do not want to become women, and proper women do not become men….”  writes Lisa, of Questioning Transphobia.  

Lisa’s words well describe the discrimination that many trans women face: the message that they’re not "right" in a fundamental way, or so says mainstream society. When it comes to women-specific services, the discrimination against trans women can be particularly pronounced, and many trans women are left without services because they aren’t "women enough."

There’s a history of struggle when it comes to including all women in women-focussed services, and the feminist movement overall. It’s not just trans issues- race, class, sexual identity and ability have also been conflicts in determining what the issues are for "all" women. (There are many debates on this, but for a piece on the intersection of race, class, sexuality and trans issues, check out this one on conflict at the Michigan Womyn’s Music Festival). The issue that’s brought up in relation to including trans women is the idea that trans women were brought up as males, and theoretically carry a world view of male privilege. The ringing question is, how can trans women understand what it’s like to deal with the oppression of being a girl/ woman when they were brought up as males? It’s an argument that has been used to bar trans women from events and services.

Vancouverite Kimberly Nixon famously took on the issue when she challenged the Rape Relief Collective’s refusal to allow her to become a counsellor because they felt she didn’t have the necessary life experience. She took her Human Rights complaint  all the way to the Supreme Court of Canada. She eventually lost, but did contribute to the awareness of trans issues among women’s groups and services across the country, creating a lot of discussion about discrimination and inclusion.

Ongoing and ever present discrimination can contribute to risk behaviours when it comes to HIV and other STIs.  Not only do people eschew safer sex, making themselves vulnerable to infection, they also turn to alcohol and drugs as a coping strategy. HIV+ Janice Rodriguez writes candidly about discrimination, violence, and fleeing to the streets after too much brutality at home.

While trans women face daily discrimination, there is cause for some triumph in the form of two new resources in the Lower Mainland. The first is particularly sweet: Lu’s Pharmacy for Women has now opened its doors a little wider to include trans women. When Lu’s opened last summer, they wouldn’t serve trans women. There was reaction to this locally, and in web communities all over the world. The Vancouver Women’s Health Collective recently confirmed that Lu’s has changed this policy. We’re very happy to hear it. 

Additional good news in the community is that Vision Quest Recovery Society will be operating Hart House, a recovery centre for trans women. Amidst the growing chaos resulting from budget cuts to many organizations, it’s great to hear of something going in the right direction. 

Positive Women’s Network is trans-inclusive- all positive women are welcome here. We’re glad to have additional resources in the community and hope this is another step in breaking down barriers that exist for trans women. 

- Janet

This blog represents the ideas of individual writers, and does not necessarily reflect any formal stance taken by Positive Women’s Network.

I’ve been reminded recently that grief is a huge thing. That might sound strange, working in the field I do, where grief can be an ongoing presence and often is. HIV diagnosis can prompt grief for any number of reasons- an abrupt change in expectations and hopes, recognition of multiple losses in relationships and health. Of course death brings with it many emotions, and often grief is at the forefront. Grief is an inevitable part of life, and a particularly inevitable part of being in the HIV community. Before the dramatic changes in life expectancy that HIV treatments brought to the industrialized world, deaths were far more common and frequent. Grieving was woven into the HIV community by necessity.

We recently set up a memorial space where PWN members can mark their grief. It’s a small corner in the PWN drop-in, a space where women can record thoughts or pictures, light a candle. Making this kind of space, however small, has been an issue for years. We’ve recognized the passing of members in different ways, and talked about a permanent space for it. Some members have felt strongly about recognizing those who’ve died, but others feel it’s a depressing thing to face every time they come in. It hasn’t been easy to settle. Both perspectives are understandable.

But HIV is a life threatening condition that causes people great distress and having a place to recognize that is important. Granted, HIV can be treated, making it less of a life-threatening condition than it used to be, but I must add, for some. Access to treatment is an issue, even here in industrialized Canada. (See page 194 of the Pathways to Healing Report, released in 2009). But the fact that it needs lifelong treatment and vigilance makes it a life challenge that can have grief associated with it.

And women don’t just die of HIV related conditions, either. There are other factors that can lead to a woman’s death- violence against women, the agony of addictions, inaccessible medical care. HIV can be tightly woven into these conditions. Having a place to open up about losing someone can create a safe place to talk. Without a place to open up, or safe people to do it with, the emotions of grief can haunt us all, and break us into pieces.

Pos blogger "fogcityjohn" recently wrote on meeting someone for the first time and spontaneously recognizing a moment of connection through shared grief. It was just a moment, and he regretted that he moved on quickly and didn’t do more to honour it. He wrote, “In grieving, we… honor those who have touched us deeply.” The memorial corner is part of the drop in, just as other parts are: shared meals, shared health challenges and solutions, births of babies, new chapters in life. It’s part of our community.

- Janet

This blog represents the ideas of individual writers, and does not necessarily reflect any formal stance taken by Positive Women’s Network.

Last week’s retreat was another huge success and many women came away connected and recharged, according to the evaluations. Retreats are unlike any other thing we offer. They are a whole weekend of symbolic unpacking by a variety of women with a range of life experiences (one attendee commented on the diversity of women and how well everyone got along). Women unpack their sadness of being diagnosed and feeling they can never look at life with hope again. Women can unpack their worries about going on treatment and how it might affect their bodies. Women unpack their long-term experiences with HIV, how they have made changes and stayed healthy. Women unpack their vulnerabilities and their successes, and share them.

All this unpacking makes change. People feel lighter, less burdened. They feel connected to others. They feel when they go back to their regular life that it is permanently changed. The space where we hold the retreats can handle it. The common room where much is shared is airy, the corridor leading to the bedrooms is wide, open. There is a lot of room for experiences. This is a place where women can talk, walk away, absorb, and revisit the same topic later with new thoughts that have arisen. This is how change happens and new possibilities grow. 

Retreats aren’t easy. Going away with a group of people who share a diagnosis that for many women is private and challenging can make for an emotional weekend. Disclosure is obvious, but not necessarily easy. Support staff are available, and there are always women who have been on a retreat before and know how intense it can be. A number of people commented on how much hope they got from talking with long term survivors. Retreats are a reminder of connection and healing at a deep level: one person reaching another. They define the “network” in PWN.

On Sunday, participants pack their belongings. But they also leave some stuff behind, and take new gifts with them. One woman said she’d be taking home “the laughter.” And that’s something great to pack.

- Janet

The next retreat will be in the spring.

This blog represents the ideas of individual writers, and does not necessarily reflect any formal stance taken by Positive Women’s Network. 

This weekend a group of women will head to Bowen Island to learn about HIV treatments, HIV and medicinal marijuana, the law and HIV disclosure, terachings from the sweat lodge, and have some fun. It’s retreat weekend, and for three quarters of the women going, it will be their first time on a retreat. It’s not easy to meet a bunch of strangers and talk about your diagnosis, but year after year, women do so and come back smiling. We’ve been offering retreats for 15 years now (we’ve even developed a Retreat Planning Toolkit to help other organizations), and we’ve learned that providing a safe space for women to connect and learn about HIV can change people’s lives forever.  

Finding a place to connect with other women with HIV is rare (PWN is only one of three organizations in Canada that focus exclusively on HIV in women, and we’re the only one west of Toronto). For BC women who live outside the Lower Mainland, meeting other positive women can be downright impossible. A third of the women attending this retreat are from outside the Lower Mainland, and this weekend will be more than a getaway -  it will provide opportunities for them to make connections to carry away from the weekend and home. One attendee at the fall retreat reported on her evaluation, "This was my first retreat and it was awesome!"

We always have more applicants than spaces, and we do have to make some tough decisions. Women who’ve never gone to a retreat are prioritized, as are women from out of town, followed by women who haven’t gone for a long time. Sadly, we have to turn some women away. For those who won’t make it this weekend, we will be holding another retreat in the fall: October 2-4. Application forms will go out in the summer, so if you want to attend, or know someone who would, please contact us to make sure you’re on our mailing list.

- Janet

In 1996, the audience at the International AIDS Conference in Vancouver heard about Highly Active Retroviral Therapy (HAART), a combination of drugs designed to limit the replication power of HIV and revitalize the immune system. HAART became the standard of treatment in the developed world, and a combination of three or more drugs with dizzying dosing schedules required tables and timers to make them effective. But HAART changed the shape of life for people with HIV. Flash forward: putting drugs into combination formulas lessened the number of pills, eased up on the scheduling challenges and some side effects. We are now in an age where HIV is often billed a chronic manageable illness, although class, race, gender and geographical differentials defy this as a universal term. Even here in treatment-rich BC, not everyone who qualifies is on treatment. The reasons why go beyond medicine.   

Anecdotally, members report  various reactions to the HIV therapy, and women often talk about their readiness to be on them. Taking the step to commit to drug therapy that could be part of the balance of their lives is not an inconsequential decision. They worry about side effects, and how they could affect their lives and people that they are responsible to and for. They feel they aren’t ready when they don’t have a stable housing situation, or are still using drugs to the point that they fear they wouldn’t manage a dosing schedule. We also hear that living in small cities or remote communities prompts fears about being exposed as HIV-positive to the community (that standard dragon, Stigma, rears its ugly head again).

Being on HIV treatment is more than a medical decision, it’s also an emotional decision. It’s a decision to face diagnosis again, a decision to make changes in the daily rhythms of life. It can be a change in health or recovery status, and taking the risk of disclosure. To embrace HIV treatment, people need good support for the fundamentals- drug treatment, housing, food. And they need to understand what it means to be on it- the benefits, the risks, the commitment and considerations. Positive peers, community supports, and health care providers can all play a role in providing accessible information and the bridges to support. Lives really depend on it.

- Janet

I’ve been thinking for a while now on this entry: women and food. Women grow food, buy food, make food, provide food, and clean up when others are done eating. They decide what other people will eat and when. When food is scarce, women tend to go without so others can eat. Some women can’t eat enough to fill their hunger. For others, anything feels like too much. Food can delight us, trouble us, and torment us. So how to write a “simple” entry about HIV and food?

From a scientific perspective, HIV attacks cells in the gut very early on. It can affect how the body digests and absorbs food. Good nutition is an essential part of keeping the immune system strong so it’s supported to deal with HIV.

From an emotional perspective, HIV attacks self-esteem and self-identity. Food plays a different role here- emotional sustenance, comfort, familiarity. The food that provides this kind of support may not be what is considered healthy nutrition. If you count broccoli and lean chicken as your comfort foods, you’re in luck, but if your tastes lean more towards the fried, buttery, or ultra sweet/ high fat,  that won’t carry you far in good nutrition.

When there’s a gap between physically healthy food and emotionally sustaining food, what’s a body to eat? It’ll probably depend on the day. If you’re trying to change your diet as you deal with the emotional upheaval of adjusting to life with HIV, giving up certain foods may fee like another loss- not what you need. If you’re having a good "kick-HIV’s-butt" kind of day, and you feel like your diet could use some changes, why not give it a go?

Ask a woman about food and it will lead to her feelings.  Understanding what you get from food physically and emotionally can help you understand how to best feed your hungers, as complicated as they may feel. It can be challenging enough being comfortable in this body conscious society. Add HIV-  a kicker. Add treatments that have caused some body changing side effects, or a struggle with an eating disorder, and food intake and body image can be very hard indeed.  

 Talking to a dietician can help. (Diana Johansen at Oak Tree Clinic is a warm source of info). No one is a perfect eater. A dietician can help with questions about nutrition and HIV,  dealing with side effects, and how to balance emotional and physical desires for food. If you want an ear for listening, you can also  contact us.  Come by on a Tuesday for lunch- we have food and comfort.

- Janet

Sangam tells the story of a woman who had our number for years before she made her first nervous call. She lived in a very small community and was terrified people would find out she was HIV+. When she did call (and attend a retreat soon after), she told us her whole world had changed. Meeting others can do that for a person.

HIV can’t help but change one’s expectations. But life does go on. And for women who come to PWN, they see that every day. People can live long and healthy lives. It’s not all gloom and doom. We’ve collected stories from women who share how they’ve faced diagnosis, treatment decisions, getting out of unhealthy relationships, becoming parents.

Life goes on. Sharing it is good. 

- Janet

 Here we are again, January at Positive Women’s Network. I  haven’t heard any  big personal  resolutions, but everyone here is dealing with the details of everyday life that makes a difference for women with HIV. We’ve set our dates for retreats for the year, so that ‘s good news. Women who have never met anyone with HIV will have a chance to meet peers who’ve been positive for years. Women who live in isolation will be able, for a weekend anyway, to be as open as they wish. Sangam’s set the schedule for the support group, which has been going in one form or another for eight years.  Stacie’s back at Outreach after a break for the holidays. And I am working on the program for SpringBoard, our annual day conference held in honour of International Women’s Day.  

This time of year can make one think about resolution or change. Change can be good, for sure, but I don’t think it’s good if it is pressed upon you by a time of year or some other force.  At PWN we work from the idea that our members come here knowing what they need, or to explore what they need in a safe, non-judgmental space.  An HIV diagnosis is a complex turn of life, and it’s not surprising that lots of people want support, oftentimes outside of their regular communities.  They want to learn about their diagnosis, how to share it, what it will mean for their health and relationships.

I’ve worked here a long time and have talked to a lot of women. Some are resolved to take it all on at once while the knowledge is fresh. If their life has changed, why not tell their world and get it over with? Others go at a different pace, a little slower, telling one person at a time, finding an HIV doctor. If you think of it as a road, some women make it a sprint  pace while others make it a marathon. Each road belongs to an individual woman and she determines the kind of runner she is.

The staff at PWN honour each race. (You can see some of those roads in the stories of HIV & Me.) While there are some shared realities for women, of course everyone is unique. Everyone has good days and bad days. And everyone has the details of HIV to cope with. We do our best to support women do just that, through programming, and resources and who we are- the listener on the phone, the leader of the support group, the the hands passing the plate of food. Working with women in BC day to day is really in the details.  

- Janet