Amy’s a nurse and says that her experience and health literacy helped her decision making. She talks about what she wants for her remaining time, and with the knowledge of chemo and radiation effects, decides that’s not the route for her. She wants to live as a person, not just a patient.

Her story echoes what an article from last winter said. In “Why Doctors Die Differently” a physician admits that because doctors know the downside of certain treatments, they opt for quality over quantity. They would rather have whole, shorter lives, than tattered extended ones.  

I think about this as it applies to my work with at Positive Women’s Network, where our organization assists women living with HIV. This includes making health info available as well as providing support workers and peers women can sound out their decisions with if they wish.  

In thinking about HIV treatment, women consider more than their health too. They have to think about how they’ll manage potential side effects and function in their day to day demands. About how they will keep on schedule with their medications when their lives can be so busy- if you mess up or miss doses with HIV drugs, the virus can resurge and be resistant to the medications meant to control it.

They also have to think about sudden disclosure if a guest sees prescription bottles in the bathroom. About lipodystrophy, a potential side effect that changes body shape.(It’s not as common with new drug combinations, but it’s still an issue for some.) If women are moms, they have to get their kids to school or daycare when they feel nauseous or need to be near the toilet. They have to think about taking these medications for the rest of their lives, as there is no cure for HIV. And even if they experience no short term side effects, what might the long term effects be? We’re still finding out.

Where are the Women?

Highlighting the lack of women in all medical research, a recent article in MacLean’s reported that females (even rats) are often excluded from medication studies because hormones get in the way. Pregnancy, the epitome of hormonal worry to researchers, is another problem again. Yet it’s our hormones that make it important that research be specific to us- our bodies function differently from men’s.

Like cancer options, HIV medications can make a huge difference in one’s life expectancy. For many they’re successful, but they’re not simple. For years HIV activists have called for more research specifically on women, and folks at places like Oak Tree Clinic are doing that important work. But treatments are being prescribed to women all the time based on research that doesn’t include enough information on women.

Every drug, even that over the counter no-name one you take for a headache, has benefits and drawbacks That’s a given. But in making decisions about cancer or HIV (or any serious health condition) that can have such profound effects on the lives of so many, it would be best to have women-specific information so women can make whole health decisions.  

- Janet

photo: Istock

My mom died before I had children, before I was even pregnant, actually. I’ve never been able to call her up so she can laugh about the latest parenting milestones I’ve reached. That’s been a huge drag many times; mostly because she deserves a huge fat thank you that I had no idea would be so justified.

Mom had a great piece of wisdom about parents and children that I’ve been thinking about lately. She felt it was important for me to have adults other than her to trust and confide in. She was that person for a friend’s daughter. She had no expectations around homework or house chores. She was the ears and heart her young friend needed.

So Mom had no problem with me confiding in the woman I babysat for, a nurse whose husband rode a motorcycle- far cooler than my parents. They were somewhat younger and totally separate from my life at school and home. They even lived in a different neighbourhood. They were lovely, funny people who treated me like the in-between creature that I was. Not a kid- I was looking after their sweet kid, for goodness sake. But full of worries and questions because I was not yet an adult. They teased me about crushes and didn’t get beefed when I ate all the cookies in the jar.

I have a couple of friends who would be wonderful for my girl that way. They’ve known her since she was a baby, but they have the luxury of arm’s length because they’re not family. And they are waaay hipper than me. We share beliefs around sex education, so if that ever comes up, my girl’s on good ground with them.

We are moving through, my girl and I. I want her to have support and good knowledge of sexual health, confidence in her own sexuality, and joy as her life unfolds. She’s an amazing kid, and I feel grateful she has loving adults besides her parents who are part of her life.

Thanks, Mom.

- Janet

Photo: Kakisky, MorgueFile

Sharon’s pick was Brene Brown’s The Power of Vulnerability and mine was Susan Cain’s The Power of Introverts. They’re not about sexual health per se, but stick with me.

These two presentations spoke of individuality and community. Of embracing your own quirky self, along with worries and weaknesses. Of realizing that everyone gets stressed and anxious.

I really appreciated the talk about getting off the standard tracks of perfectionism and “ta da!” extroversion that we’re encouraged to embrace, often at the cost of our individuality. Breaking free from that thinking can change our lives. And here comes the sexual health part- breaking free from prescriptive ways of being can influence all parts of our lives for the better, sex included.

Give them a look/ listen. See what you think. And about how freeing yourself from prescription might be a benefit.

 - Janet

 photo: Morguefile

The past week was a lively one in the US, what with Utah busy banning sex education and determining a difficult future for their youth. Nothing like laying the groundwork for glory. This despite research that says sex education can help delay sexual debut until kids are a little older.

But it’s not just about numbers. The research says the difference isn’t just in timing of first sex; it’s also in the choice of partner. Kids who waited longer were more likely to choose a partner closer to their own age. For heterosexually minded girls, this is significant. Girls who enter relationships with boys or men older than them can be at a disadvantage. The likelihood of exposure to STIs is higher, given that older males will likely have had more sexual partners. Pair that with lower self esteem of younger girls in relationships with older guys and you have risks that I don’t like as a parent.

We all have bodies with hormones that affect us, especially in the teen years. If kids are educated about how their amazing bodies work, won’t they be all the better prepared to honour and enjoy them? Give kids sex education that talks about all the aspects of sexuality, including biology and relationship dynamics. We should talk about pressure and control, about online intimacy as it translates into real life, about birth control, STIs and sexual orientation. Doing any less is a disservice.

Janet

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 Positive Women’s Network

photo: MorgueFile
 

Some may think talking about one’s personal demons so openly is a bad plan, but I think it’s a personal choice and really appreciate her honesty.  One of the things I track for You Should Know is articles on mental health and women. The focus at YSK on midlife and beyond can’t escape the emotional ups and downs of perimenopause, which can bring depression and/or anxiety. Both ends of that spectrum can be isolating and feel so shameful.  

A recent report says that one in five Americans have had mental health problems in the past year, with many youth affected.  In adult populations, women are more likely than men to struggle. If this is so common, we need to start talking.  Which is why I love The Bloggess for going “live.”

A great thing about social networking is the truly social part-it’s informative, it’s fun and it can be supportive, like in this case. It can offer relief when you realize, “Oh, I’m not the only one.”  Especially if you’re feeling, in the words of Anne Lamott,  “My mind is a neighbourhood I try not to go into alone.”

Everyone’s mind can be a lonely neighbourhood, but there really are lots of neighbours in warm homes all  around- we just have to realize that.  Imagery aside, I’m not a doctor, so do see yours if your feelings are interfering with your ability to go about your every day routines.  Some mood swings are part of normal, and others do need assessment and help.

Really, you’re not the only one.

- Janet

PS-  My post on Positive Women’s Network last week discussed the criminalization of  HIV disclosure- is it working?

Image: iStock

Several pieces in particular caught my attention in the past week. One was from the Jamaican Women’s Media Watch (WMW). They’ve launched a training manual for gender aware media. In the piece covering the release, training Coordinator Hilary Nicholson said,

“What used to be considered pornography or even soft porn, now reaches school children on their cell phones and it has become so everyday that we don’t even see it as soft porn, it’s just considered sexy.”

“Sexy” is used for selling everything. If you have your wits about you when watching a fifteen second commercial, it can be laughable how sexy women are used to sell the most unsexy things. I try to have my wits about me when watching TV with the kids, but honestly, I don’t always. After a long work day, picking up the kids, making dinner, returning phone calls, and all the stuff that goes into planning for the next day, my wits have often walked.

But I will be discussing these ones – Virginia over at Beauty Schooled posted an article on iVillage last week about bikini waxes being peddled to twelve year-olds. Twelve! I was thankful that Lissa Rankin and others retweeted my outrage when I first shared the post- the more energy for this issue, the better. Telling twelve year olds to reject their natural bodies before they’re even done developing follows the nasty hate-your-body theme. And you probably heard about retail chain H&M admitting they combine digital bodies and real heads to “create” their models. Un-real women. Again, not in a good way.

I am thankful for the many people talking about this stuff so we can support each other and our kids and  challenge these advertising norms. Helping my kids have analysis is important; helping change things is vital.

 - Janet

As the details of the murders at L’Ecole Polytechnique came out, the city reeled. It was a horrible time. Twenty-two years ago- a lifetime ago that those women will never know. They’d be middle aged like me now.

A friend of mine won’t speak the name of their murderer. “Why give him any more air time?” she asks. The focus should be on the women, not on perpetuating his name in Canadian history. It’s a tough piece of our history, for sure.

Sadly, violence against women occurs every minute of every day around the world. Girls and women are controlled via culture, society, finances, fists and weapons. They’re controlled by lack of sexual health education and sexual health services.  They’re abused through physical and sexual violence in all kinds of socially sanctioned relationships. Many girls and women in the world live their lives in fear.  

Twenty-two years ago in Montreal, women like me were afraid too. What had happened was way too close. I handed in a paper- late and lousy. My professor remarked that it wasn’t up to my usual style. I admitted that I’d been having a hard time since the shootings. He was flabbergasted, then immediately apologetic, saying I should have asked for more time. It hadn’t occurred to me, because the message to women is that we must always get on with things. Get along.  

Violence against women shouldn’t be bearable. We shouldn’t have to get along. It should be something the world fights against, for ourselves, our daughters, our sons.

Tomorrow is the anniversary of the women from Montreal. Take a minute to remember. Then, please, talk to someone about making change. If you’re in Vancouver, join Women Against Violence Against Women at the Vancouver Art Gallery. Look locally wherever you are, because people are trying to make change.Together we have to make a difference.

- Janet

Twenty years ago some visionary women set out to support women with HIV in Vancouver, BC. They were women with HIV and women from various backgrounds- nursing, social work, and education. They knew something needed to be done for women specifically, and their first meeting in the common room of a housing co-op led to the nationally recognized organization that Positive Women’s Network is today. Positive Women’s Network (aka PWN) not only provides support to women with HIV, they also develop education, prevention and health promotion info- like You Should Know. One of the big themes talked about back then was the stigma that women face, especially as members of intricate family units that centre around them.

Stigma still exists everywhere for women with HIV. A Canadian study of women revealed that stigma figures highly in their day to day lives, as do sexism and racism.  Women the world over report this. There is stigma in having HIV, and stigma in “bringing it into the family” whether this was the actual case or not. Women who discover their HIV status during pregnancy often bear the brunt of blame, as they receive the diagnosis their husbands haven’t sought.  

But women challenge stigma, and challenge the destruction that HIV brings. The Grandmothers to Grandmothers movement is a great example. Many grandmothers in African countries have to step back into parenting their orphaned grandchildren when adult children die of AIDS. Grandmothers here in Canada work to raise awareness of the need for this work and funds to support it through the Stephen Lewis Foundation. (Yes, that IS a plug to donate!)

Peer support is also an essential part of confronting HIV as it weaves through medical, political, socioeconomic, geographical, and intimately personal pieces of life. (Yes, that sentence is a challenge. – but so is living with HIV). Members at Positive Women’s Network say “PWN is a confidential and safe space created for women…it feels like a family, feels like going home.”

As one woman puts it, “Women heal women.”

But women can’t do this work alone. Women and men need to work together to change the shape of what it’s like to live with HIV. Many courageous and strong people do just that. As the Positive Women’s Network community contemplates the beginning our twenty-first year in “Challenging HIV. Changing Women’s Lives” we ask everyone to “Do something” on World AIDS Day. Learn about HIV; talk safer sex with those you care about, young and old. Share the humility that this could happen to any one of us – risk factors for HIV transmission are based on human vulnerabilities. Make sure you and your loved ones know how to prevent HIV and where to go for support should it be needed. Don’t deny- do something.

- Janet

 Photo: MorgueFile

Another edit of this post is on Positive Women’s Network

That’s the message behind a new campaign that was launched recently in Vancouver, a part of a larger project called Seek and Treat for Optimal Prevention of HIV/ AIDS. Its acronym is STOP, and the goal is to eliminate new HIV infection.  

Part of halting new infections is identifying current infections. The Public Health Agency of Canada estimates that about a quarter of Canadians who have HIV don’t know it. In the U.S., the estimate is that about one fifth of HIV+ folks don’t know.  

HIV can go undetected for many years because it doesn’t produce obvious symptoms, even though it is damaging the immune system. But because a person can have HIV for many years before being aware of it, they might transmit HIV unknowingly. You can’t tell from looking at someone whether or not they have HIV. If they don’t know, neither will you. This is where It’s Different Now comes in.

The campaign encourages people to get tested because HIV healthcare and management has changed dramatically – for testing, treatment and life. The test itself is being offered on a more routine basis. It’s not a judgment call about that slippery “lifestyle” concept, it’s framed as health screening that everyone should get.

For folks who do test positive, treatment may be suggested if their health warrants it. HIV treatment can have a huge impact on your health and that of your sex partner(s). HIV treatment reduces the amount of virus circulating in the blood (known as viral load) and slows the reproduction of HIV, giving the immune system a chance to recover. When viral load is under control, the likelihood of passing on HIV is reduced considerably, as I blogged about recently. Hence “treatment as prevention.”  

And treatment, if it’s needed, is simpler than ever before. For some people it can be as minimal as one pill a day, with few side effects. Life with HIV won’t mean you go on as before- of course it’s an adjustment. But you don’t have to worry as much about dying a premature death. With access to treatment,* many of the people diagnosed with HIV these days will live close to a normal lifespan.

Should you test positive, there’s more than medical support out there. Positive Women’s Network offers support for women with HIV in BC, and there are other organizations that do so elsewhere.  

If you haven’t been tested for HIV, check out the It’s Different Now website for information on why, how and when you can get tested. “We don’t think you’re special” reads the promo. In other words, just do the healthy thing.

Janet

*The worldwide challenge with treatment as prevention is that providing treatment is beyond the means of many countries and individuals. Individual advocates and organizations are working to address this, including the William J. Clinton Foundation. 

 December 1 is World AIDS Day. This year the UNAIDS theme is “Getting to Zero.” See the many intepretations.