I loved this article about a new TV show that totally misrepresented information about HPV (aka Human papillomavirus, if you prefer the long handle). I didn’t love the misinformation, but I loved the writer’s critique.

The summary of the piece is that a TV show character mixes up HPV and HIV (human immunodeficiency virus, again for the long handle lovers). She gets lousy information from her doctor and panics. Sounds like an argument for good sex education if I ever heard it.

Wonderfully, the writer shares the correct information on HPV and testing for other STIs (sexually transmitted infections). She also makes a valuable point about storytelling – while TV shows aren’t the best source for accurate information, they have great impact on viewers because the emotional impact of a story can easily override facts.

We know stories are important, especially when it comes to health. Shared experiences can be fantastic support. But shared misinformation can do a lot of harm. “Do you know what happened to Susie when she got [fill in the blank]?” Of course it’s bad news.

Don’t assume what you see about health related stuff in a TV show or movie is correct. While some shows do have scientists review what is presented (a welcome job to this chemist), not all do.  Mark Chichocki offers this as his list of best movies about HIV/AIDS, and given his nursing background, I trust it.   

End of the story is, don’t jump to health conclusions based on last night’s sitcom. And if you research your own health info online, which many people do, take information from “Dr Google” to talk over with your doctor(s). Take your time, ask questions if you’re not clear on something, get a second opinion if you want it.

Your health is yours alone, and not like that of a TV character.

- Janet

Photo: FreeDigitalPhotos.net

Ring the bells that still can ring
Forget your perfect offering
There is a crack, a crack in everything
That’s how the light gets in.
            Anthem
            Leonard Cohen

The other week was the 18th anniversary of my HIV diagnosis and I had made it through most of the day without even realizing. I was walking with a friend when it struck me and I declared the milestone out loud. She looked at me, smiled, and said, “It’s worked out alright for you.” Initially I was taken aback. What an unkind sentiment. I’m HIV+!! How does that work out alright?!?  

I was shocked and scandalized and all those other highly dramatic responses. The drama lasted about a nanosecond until I realized I agreed with her: it has worked out alright. It truly has and it’s this perspective that I tend to live out; sometimes I despair, but usually I’m very even keel with this virus. We had a good laugh making light of what can easily be a depressive topic. My friend is one of the reasons I tend towards optimism.

The anniversary of my diagnosis falls one month before my birthday and for more than a decade I used to celebrate the diagnosis rather than my birthday. Well, maybe “celebrate” is the wrong word – a more appropriate term would be I used to mark the date with a gathering of friends. Recognizing the day served many purposes, but mostly it was an opportunity for me to count my growing blessings.

Please understand I’m no Pollyanna; I can rage against it all with the best of you. Yet I also have an uncanny ability to find a blessing in the shittiest of experiences. I prefer to embrace the full spectrum of life and with this motivation in my heart I have surrounded myself with friends who can see the silver lining without ignoring the gathering storms. It makes for a much more interesting life to try to see all aspects.

How has it worked out alright? Well, I’ve got a great home, my income meets my needs, I work in a community that I love, I have a fulfilling spiritual discipline and I have a treasure trove of dear friends. Most importantly, I have my health, which is strong.

I live in a subsidized unit at a housing co-op. In the mid-80s the co-op designated my suite for a person living with HIV/AIDS. It’s a 2 bedroom unit, but charged as a 1 bedroom. The second bedroom is for a live-in care provider. How forward thinking was that in the mid-80s? It’s been a relief for me to have someone stay here and help me through the rough patches when they happen without it being an economic burden.

Oh money. It’s the source of a lot of anguish, isn’t it? I went onto disability benefits a few years ago and what an adjustment that was! Before I could collect a cent I needed to exhaust my savings. Ugh. So there was the financial readjustment aspect of going onto social assistance and then there was the psychological reconciliation of being dependent on a bureaucracy for my income. Double ugh. But even this has worked out alright for me because my housing is affordable, I have the free time I need to take care of myself and I have an engaging part-time job. For sure I live in poverty, but that is only an economic designation because truth be told I actually live in abundance.

My true riches lay with those I love and I have many dear hearts. My friends are my saving grace and I don’t take them for granted.

Over all, it has worked out alright for me. However, I in no way seek to diminish the very real and intense struggles inherent in living with a life-threatening chronic illness. Yet with that said, I do choose to not focus solely on the struggles but to also recognize the potential for growth. Coming to terms with illness can be a tremendously rich experience. It breaks some people and it makes others stronger. Thankfully I’ve found myself in the latter group. It’s not easy and I can’t say I’m not broken because I am broken. I’m full of cracks. But it’s also worked out alright.

- Monique

*Sigh.*

It was disheartening to read a piece on HIV funding that appeared in Xtra a couple of weeks ago. I could understand author Rob Salerno’s take on the challenging process that many HIV service organizations in Ontario faced recently in applying for funding under a tight deadline. Here in BC we faced it too, and there were supportive phone calls and emails back and forth between groups as we all wrote feverishly to meet said deadline. 

What I found disheartening was Salerno’s comment on one successful funding application. Instead of applauding it, he wrote, “ I’m unconvinced that a province-wide wellness retreat for HIV-positive women …. (is) the best use of limited public funding to fight HIV.”

You know, I’ve heard that before.

Positive Women’s Network has been around for over twenty years, and in that time we’ve had people bluntly ask us why we deserve funding. Why should services for women with HIV get money when so many more men are infected? The answer is this- women get HIV, and are doing so in increasing numbers. Their needs, experiences and lives are different than men’s. A sampling could list gender roles, biological vulnerability, women’s roles in their specific cultures, histories of gender-based violence and sexual assault. Women express the need for women-only services, as we heard over and over when we did a retrospective of our work. One type of organization doesn’t fit all.

We offer a range of services that include weekend retreats for women. These retreats provide health education on HIV, treatments and disease progression; leadership development, and peer support. Women tell us we’ve changed their lives and made a death sentence manageable. Some aren’t sure how they would have gone on if it weren’t for our retreats. If that can be offered to women in other parts of the country, bravo, I say.

Salerno despairs the lack of funding that compromises the work of support organizations, and I get that- there isn’t enough money to go around to everyone. Yet he also recognizes that the organization that successfully received funding has a client base that’s over one third women.

We are fortunate at PWN that many organizations and individuals we’ve worked with over two decades have abandoned their skepticism as they’ve seen the women we work with and the work we do.

HIV funding isn’t endless, as anyone who applies for it knows. But are we in this fight together or what? I’ve believed through the work of many that we are, but obviously there are folks who hold a different opinion.

- Janet

“When my arms wrap you round I press My heart upon the loveliness That has long faded from the world.” Yeats

What’s the best thing about spring? The delicate flowers? The fresh mornings? The growing daylight? Yes, yes, and yes. I would also add one more: falling in love. Ah. Isn’t this just the best time of year for new beginnings? It’s true; your intrepid blogger has indeed met her match and is infinitely surprised. I am surprised in so many different ways. 

I’m surprised that I feel so comfortable and confident. I’m surprised that in the grand scheme of adventures this one has a relative ease despite its exponential excitation. I’m surprised that my feelings are reciprocated. And I’m also not surprised in the very least because at the core of me is a deep abiding faith and I have spent years preparing for this inevitable relationship.

It’s been 18 years since I’ve been with a man. Take a moment to look back over your last 18 years and recognize how much you have changed. My life is not so different. I was in my mid-20s when I was diagnosed with HIV and embraced celibacy. I am a completely different person than I was then and I would be a different person even without this virus. We all change and grow. Our motivations alter; our dreams die and are reborn anew. I was very wounded 18 years ago; I was unable to maintain most of my relationships.

So, here I am in a fresh romance. I am completely surprised that I feel so comfortable and confident. I feel safe and this is the primary reason for my comfort and confidence. I have been concerned that I would make the same mistakes and that I would revert to old destructive behaviours. But I have changed. I have grown. I have learned new behaviours. I have stronger communication skills.

It could be the years of therapy. It could be the unrestricted hours on my yoga mat. It could be the blessed assurance I have found upon entering my 40s. I can’t say for sure; all I know is this is far different than anything experienced thus far. If you’ve ever fallen in love then you know this sensation of newness. In sitting with these new sensations I realize it’s because I’m not ashamed anymore.

Moving Beyond

My HIV diagnosis was a source of great shame for me because in my mind (and heart) it confirmed all the harsh judgments I had heaped upon myself. The virus also confirmed the judgments slapped upon me by other unnamed and unkind people. It has been my biggest life challenge to release this shame. It’s been a complex and painful exercise, but one I would encourage anyone to move through. Shame is insidiously destructive.

In looking back I can see points of releasing shame, I have visualized the process as barnacles falling off or being scraped off the hull of a boat. I remember learning that barnacles need to be removed because they reduce a boat’s integrity, but even upon removal the corrosive nature of their attachment can have lingering destructive effects upon a vessel. I think in metaphors and I latched onto to this one because I find it succinctly illustrates the psychological scars we accumulate as we navigate through the waters of life. I had to release my scars. No one else can heal our pain. Someone can certainly soothe it with their empathy, but ultimately we are all responsible for our own being. I had to do the hard work of finding my own integrity. The release of all vestiges of shame allows me to sail into this new relationship.

I am, however, not completely enchanted – I know my skill set has yet to be tested. I know we will have our challenges in getting to know one another and figuring out how we best function together. I know I’m in the very, very fresh and exciting stage of romance when everything is adorable. I know my brain is bathed in feel-good biochemicals. I know! Oh, I know. But I also know that I see the potential of a great adventure between the two of us and there’s nothing I like more than learning something new and experiencing life with an open heart. Allons-y!

- Monique

photo: iStock

When we held our first health promotion conference we called it SpringBoard because that was the goal- to launch conversations about women’s HIV health so we might inspire change. Eight years later, we’re still talking – with HIV service providers, positive women, students in health care and sciences, and a wonderful group of people in HIV, mental health, addictions, and anti-poverty work. 

Every year we explore different themes- last year it was Aging Gracefully. A couple of years ago it was looking at Confines of Health.  This year’s theme is Living Out Loud, and like the others, it’s open to interpretation. Presenters will all have an interesting take on it-

• Dr Myles Blank will address mental health and HIV. He works with women at Oak Tree Clinic and SheWay.
• Micheal Vonn of the BC Civil Liberties Association will present the latest on court cases about HIV disclosure, including the facts from the pending Supreme Court decision.
• Glen Bradford of Positive Living BC will present on the theme as it plays out for peer support staff in the Patient Navigation program.
• Melanie Kuxdorf of CIHR Canadian HIV Trials Network will be looking at it as it relates to using social media to do community research.

A wide range of interpretations, yes. And once again, the hope is that we will spark inspiration for strengthening the many communities women with HIV inhabit.

Join us May 3, from 1030-230. Registration is free but you must register in advance. We look forward to seeing you!

- Janet

Super happy- I spent Wednesday at Health Care 2.0 Social Media Camp, an event presented by the BC Patient Safety & Quality Council. It was lovely to see people I’d met previously through the Healthcare and Social Media Canada community (#hcmsca on Twitter) and to meet new faces who are as keen as I am to share the word about the potential of social media tools to engage, build and support health communities.

Social media tools are used by many community groups to enhance their relationships with individuals and organizations. We’re active on Twitter and Facebook, and to a lesser extent, YouTube (there are only so many hours in a day). Social media tools can help reach organizations and individuals who don’t live in the Lower Mainland- wherever there’s Internet, there’s a voice.*  We share program information that helps women get connected with us and ease their isolation. We also share resources and research findings so women with HIV and the folks supporting them can get up to date information for the best care no matter where they are. 

The exciting element of social media is the “social.” It’s participatory, and everyone can have a voice through sharing, discussing, and reflecting on what’s posted. This can result in strengthening communities and visioning change where it’s needed. Ongoing throughout is the opportunity for conversations.

Those of us using Twitter in the HIV community in Canada connect through community hashtags- #HIVCan, #HIV, #AIDS, #AIDSlaw etc. (Here’s a list of the tags often used). We can get program and event information to each other immediately; and share info about local and international action. New findings about HIV, prevention and treatment news is shared far and wide. A lot of activism is also carried out online via petitions that go around the world.

Social Media Tools Perfect for HIV Connections

One of the fantastic things happening through social media tools is the opportunities for patient empowerment, peer to peer connection, and patient to healthcare provider communication- sound familiar?  This is what HIV activism has always been about, and social media streams a great way to carry it on. Now it’s crossing over into other health issues as well. Community development, patient empowerment and making change in how doctors and patients work together is a growing wave that is supported by the energy flowing through social media channels. 

For those of us in the wide reaches of Canada working with little money for meeting in person, social media tools are also a great way to get to know people. As Kat Dodds from Hello Cool World said “Social media is all about collaboration; connecting with the people you want to work with.”  The HIV community is rich with accomplishments and ripe with possibility.

Like any research you read, always consider your sources- there’s incorrect information out there.  Look for established AIDS support and research organizations, medical researchers, or places like the CIHR Canadian HIV Trials Network or BC Centre for Excellence in HIV/AIDS. You can start by looking at the lists we have on our Twitter feed. And if you haven’t already, think about joining conversations on Twitter about healthcare and social media. Here in Canada, use #hcsmca to find out more about it. If you’d rather look for HIV info, #HIV will get you lots of stuff. There’s a ton to discover.

- Janet

*Communities without reliable internet access are harder to reach, obviously. I hope this will change as systems are upgraded.
 

Happy International Women’s Day! Today we honour the work of generations who have made change to make our world what it is today. And today we celebrate the work we’re all doing to make things better for the women of tomorrow.  

There is still a lot to take on- gender violence, equal rights, cultural "norms" that place girls and women behind men. Voting rights, control of money, property ownership, health care, and access to birth control options are all works in progress. These are just a few of the issues we have to take on. There’s a lot of work in progress.

And that is amazing. 

Women often face ongoing and frequently brutal adversity, but that doesn’t stop us. Women are resilient, resourceful, and passionate. 

Happy International Women’s Day to all women. To our girls- we’re working on a better future for you. 

Together. 

Janet

Cross-posted at You Should Know

photo: MorgueFile
 

I’ve been practicing yoga for a few years, but have gotten much more disciplined with my practice this last year. My first yoga class was more than 30 years ago and while I enjoyed the experience I wasn’t too motivated to add it into my daily routine. When I was diagnosed with HIV in the mid-90s I gave yoga another try and found it very beneficial for managing stress. However, yet again, I didn’t practice it with any regularity. 

Last year I started attending classes at Unity Yoga Teahouse and things just clicked for me; the studio is the right combination of spiritual, physical, intellectual, community, and individual for me to feel fully engaged. You know how some yoga studios are all about the athletics? Or some are far too religiously dogmatic? Or some have an unspoken dress-code? Not here. All are welcome at Unity. And they offer a discounted drop-in rate of $5 to Friends for Life members. Awesome deal!

Everyday I head down to my favourite studio for a class; sometimes I stick around for two. If you had told me a year ago that I’d be stepping onto a yoga mat everyday I would have laughed. Where would I find time for such indulgence? How could I afford that luxury? By the end of my first week of paying the drop-in rate I figured out where to find the time and how to afford this practice. Why? Because I have never, ever, felt more powerful, more sexually balanced or more fully integrated.

Facing "Sexy"  

Like many people in our society I struggle with feeling good enough, and as a woman I have struggled with feeling attractive. Everyday we are bombarded with homogenous images of beauty, and truth be told, I don’t fit that narrow definition. Not many of us do. Furthermore, we are constantly told to look sexy but to not be sexual. It’s incongruous and maddening. We are all such fragile creatures, walking around doing our best to protect our soft spots. We observe external markers of success and we internalize them hoping that we too will be successful. What does success look like for you? For me success is being physically capable, personally safe, intellectually stimulated and spiritually aglow.

At times, my struggle with feeling good enough has been overwhelming – receiving an HIV diagnosis can be soul crushing. I was overcome with feelings of shame. Quite simply, I hated myself and judged myself very harshly. I could not separate my actions from my being; I determined my ‘bad’ actions made me a ‘bad’ person. I felt used, dirty and worthless. In speaking with other HIV+ women I know I am not alone in feeling this way. I think we feel such self loathing because HIV is often transmitted through acts of intimacy and our society has wrapped a lot of judgement around sexuality, particularly women’s sexuality.

In looking back at myself prior to infection I see a young woman who was using her sexuality to affirm her worth. I equated his interest in having sex with me to him liking/loving me. I know some of those men did truly like/love me, however many also just wanted to have sex. I’m OK with that now, but at the time I felt confusion and pain. In looking even further back, I see a little girl who was exposed to sexual images, conversations, and activities that were downright inappropriate. It’s not surprising I looked to my sexuality for my self worth. My willingness to connect sexually was my currency and I went on a spending spree. I never did find fulfillment.

Where I Am Now 

In my last post I shared that I have been celibate for 18 years and it is during these years that I have put the work into healing those traumas and into learning new skills. I know my youthful exuberance with sex was not bad. I know I was not, and am not, a bad person. I also know a ‘good’ person will sometimes make ‘bad’ choices. We’re all fallible; therefore, I take responsibility for my actions and their consequences. That’s basically all we can do, right?

I am now comfortable in my body and I am comfortable with my sexuality. I’m eager to express myself fully and completely. I know I will be a curious, generous and loving partner when the time presents itself.

I am comfortable in my body because I have a confidence that is not dependent on external input. It is my daily yoga practice that gives me this assurance. In challenging my body, quieting my mind, and honouring my heart I have found a welcome discipline that keeps me edified. Yoga is my magic bullet. What is yours?

- Monique 

photo: iStock 

Less than a month ago Janet posted about HIV disclosure and criminalization on this blog. It’s a complex social justice issue fraught with many, many shades of grey and I’m not going to step foot into that legal labyrinth at this point. I will, however, share my personal struggles with disclosure.   

I was diagnosed HIV positive in the spring of 1994. It was so traumatic I can remember the exact time – 12:42pm. The whole day is frozen in a capsule that I tend to pick up and inspect with far less frequency as the years pass. As you can well imagine, it was shocking news and in an attempt to get away from the grief in all my friends’ eyes I drove across Canada and set up a new life in Vancouver. I would soon learn the grief came with me, as I only needed to look in the mirror.

I made a lot changes to my life in those early years after diagnosis. Most of them were very healthful and empowering. I quit smoking, I engaged in therapy to address a lifetime of abuse, I delved deep into a spiritual discipline, I returned to university and perhaps the most impactful of my choices: I embraced celibacy. I remain celibate today. It has been 18 years.

Initially my choice for celibacy was in reaction to feeling terrified of infecting someone, and so, I closed myself off from any and all physical intimacy. As I began to educate myself about HIV and become more comfortable with the virus I grew more at ease with being positive yet I was still not ready for a physical relationship. As the years passed I settled into celibacy and it stopped being a conscious choice.

Celibate… or Not?  

The sting of HIV is mostly diminished in my life, but there are times when I am still haunted by it. Last year was one of those times. I was content knowing I would be single the rest of my life and I was certainly not looking for a partnership. You know where this is heading, right? Uh huh. I met someone who blew me away. He took me completely by surprise and all my dormant female hormones sprung into action. My chakras whirled in celebration.

We flirted but never took our attraction anywhere. It was over as fast as it began. Well, nothing between us even began. But I woke up and took notice of a different life! It had been a long time since I had connected to my alluring female energy. My goodness, fully inhabiting my body is amazing. You know what I mean? That amazing feeling of walking down the street with your head held high, with a gentle curve in your back, and your stride long and loose. You know it. The sway of your hips. The rise of your breasts. Blessed be. I love being a woman! I joyfully find myself ready to be with a man again.

And this is where I collide with the fact that I will need to disclose my status to the person I choose to be with. One of the benefits of celibacy is I don’t have to tell anyone. But now I’ve gone and complicated the plot because before I become sexually active I will tell my partner I’m HIV positive. You see, I was infected by a man who knew full well he was positive and he kept that knowledge from me. I will not do the same.

I think about that exchange I’ll be having in the future. I go over conversations in my head and with my friends. When do I disclose this information? Probably not really first date material. Second date? Maybe. I’ve been on a few dates recently and I can gauge a guy’s comfort with STIs generally and HIV specifically when I toss out what I do with my life. I sit on the board of directors for the Canadian AIDS Society and I work at Positive Women’s Network. Those two things open up a discussion. So far, I’ve been pleasantly surprised, but I haven’t had to have that difficult conversation to date.

Quite simply, the thought of disclosing to someone I care about and am interested in being with petrifies me; therefore I’m kind of thankful the situation has not presented itself. But it will. It’s inevitable and in that moment I will need to draw on all my HIV transmission awareness, my yogic breathing techniques and my unfathomable reservoir of courage. I keep reminding myself that when I do find myself ready to disclose it will be with a person that I have come to know and it will be with a person whom I already trust. I will still be shaking in fear, but I will disclose.
 

- Monique

photo: iStock 

I’ll admit I’ve been a bit distracted these past couple of weeks, pulled into the waves of info on the Supreme Court of Canada proceedings on the criminalization of HIV disclosure, and the continuing drama unfolding in the US between Susan G Komen for the Cure Foundation and Planned Parenthood over funding for breast cancer care.

Here are the nutshells if you don’t have them:

The Supreme Court of Canada is considering two cases about non-disclosure of HIV status in sexual relationships. Most people with HIV do share their status with potential sex partners, but in the cases where they don’t (or don’t before first sexual contact), criminal charges can be laid. Some of the many questions being debated –

• If a person doesn’t disclose their HIV status, can the “yes to sex” from their partner really be classified as “informed consent”?
• Other cases have argued there must be a risk for “significant bodily harm”. So what is a significant risk of harm and who determines it- the person with HIV? Their sex partner? The courts? 
• HIV treatment can significantly reduce the risk of transmission, hence the “treatment as prevention” concept. Will this new science figure into these cases?

The two cases under review are being considered by our country’s highest court, so these decisions will have oomph.

Breast Cancer Care is Women’s Health Care, but Komen Differs…

Then there are our neighbours in the US. Susan G Komen for the Cure, a foundation that calls itself “the global leader of the breast cancer movement” cut off funding to Planned Parenthood for breast cancer care provision a couple of weeks ago. Their explanations were inconsistent, but one was that Planned Parenthood is currently under investigation about the source of funds used for abortion care. Komen recently enacted a policy that no organization under investigation will be funded, and as far as I understand it, Planned Parenthood is the only organization affected by this policy so far. The power behind the new policy was Karen Handel, who prior to her work at Komen ran on the Republican ticket and was at that time criticized for not speaking out enough against abortion. Add that to the drama.

The reaction to the funding withdrawal was huge, the backlash against Komen was stunning. Komen has reversed their decision and now says Planned Parenthood can be eligible for funds. But this has not been without the internal turmoil of threats or actual resignations (Handel resigned) and a huge cost to Komen’s image as a promoter of women’s health.

The tale’s full of politics, positioning, and prejudice and the loser is women if they don’t get the care they need. That’s also one of the arguments about what HIV criminalization can do- if having HIV can potentially land one in jail, there’s a disincentive to test, and then get care. Without care, HIV has a chance to do its nasty damage to the immune system. And without HIV treatment as part of care, people are more likely to transmit HIV to sex partners.

See why it’s been quite a time?

All of this is still in process, but some links follow below if you want to dip into the tides.

- Janet 

Coverage of Supreme Court and HIV criminalization 

Vancouver Sun editorial that criminalization isn’t the right approach

Toronto Globe and Mail on necessity of disclosure

CBC Early Edition podcast with Micheal Vonn of the BC Civil Liberties Association explaining the issues

Good piece poses a question for everyone: do you discuss your sexual history with sex partners?

Komen/Planned Parenthood 

Explanation of why Planned Parenthood is under investigation

Does Komen apology seem credible?

Good piece on the inconsistencies of decision

Planned Parenthood response to cuts…  and their response to Komen’s reversal.

Komen says decision and says is not politically motivated