WEGO Health Activist Awards: I’m Nominated

purple box-shaped graphic with a light blue scalloped line inside surrounding a B&W picture of a femme writing in a notebook with a pen; over the photo says 'WEGO Health Activist Awards: I'm Nominated' in yellow and the bottom of the photo says 'chronic sex' in white text

I am excited to announce that I have been nominated for a ton of categories in the 6th Annual WEGO Health Awards – Best Kept SecretPatient Leader HeroBest in Show: Blog, and Advocating for Another.

WEGO Health is a mission-driven company connecting healthcare with the experience, skills, and insights of patient leaders. They are the world’s largest network of patient leaders, working across virtually all health conditions and topics. Click here to learn more about their Patient Leader Network.

The WEGO Health Awards were created to celebrate those who tirelessly support the mission of WEGO Health: to empower the patient voice. With 16 award categories, the WEGO Health Awards are the only awards across all conditions and platforms that recognize the over 100 thousand inspiring Patient Leaders who raise awareness, share information, and support their communities – but often do so without recognition.

I’ll be honest – I’m not sure who y’all are who nominated me, but you’re beautiful. It’s been a rough couple of years and I’m not always sure anyone is listening, watching, or paying attention to the work I’m doing. Don’t get me wrong – I’m not doing it for accolades, but it’s nice to get a pat on the back once in a while at the very least.

purple-tinted photo of a person's hand giving a thumbs up on the right; on the left, a golden outlined purple text box says "WEGOHealth Awards" with smaller orange text below saying "endorse me today!"

This year, the 16 WEGO Health Award winners will be honored at the 5th Annual Patient Advocacy Summit in Washington, DC October 23rd and 24th, 2017. How cool is that? It’s a big deal and would be a great thing for any of us to be able to attend. If you’d like more information about the summit, you can learn more here.

I’m now looking to my incredibly supportive network to help endorse me for this award. The best way to help out? Click here to be taken to my WEGO Health Awards profile where you can click “Endorse” under my nominee photo.

If I have ever supported you, made you laugh, or inspired you to keep fighting – please consider endorsing me for this award. You can continue to nominate and endorse your favorite health activists until September 1st.

Are You Tired of Cishet Studies on Relationships and Pain, Too?

sepia-toned photo of two people holding hands - only the hands are really visible against a desert-like backdrop - both hands have a lot of jewelry on them - a white overlay on top has black text over it asking "Are You Tired of Cishet Studies on Relationships and Pain, Too" and the same setup below says "chronic sex"

I was really excited to see a new study come out saying that a touch from our partners can help relieve pain. It’s one of those obvious things, especially to anyone who knows about how our brains release oxytocin. The hormone has long been known to relieve pain as well as being the ‘love’ hormone.

It increases bonding between people, especially when they’re physically close to each other. For example, it’s released during sexual activity!

I wanted to know more about the study, so I turned to their free journal article on NCBI.

Write-ups don’t tell the whole story

One thing I found interesting was that the study is also heavily focused on empathy. Sure, a loved one hugging you while you’re in pain may help – but it helps more if they care you’re in pain, too.

Additionally, they studied both respiratory and cardiac response in both partners as well. Heart and breathing rates in the non-pain partners tended to try to match those of the pain partners when touch was involved. When pain happened without touch, this didn’t happen.

Anyway, I was excited to see that someone verified something a lot of patients and providers have known for a long time…

Until, you know, I realized this study was only done on cishet couples.

Why are studies always on cishet couples?

From the study write-up:

Dr. Goldstein and colleagues gathered 22 heterosexual couples for their study, who were all aged between 23 and 32.

The researchers asked the couples to participate in a range of tests that replicated the experience of being in a delivery room.

The female participants were assigned the role of “pain receiver,” while the men were “pain observers.”

There’s some good ol’ fashioned sexism in here, too, right?

Barf.

In their limitations section in the journal article, researchers discuss how only females underwent pain and males were the outside partner. They do suggest that there need to be similar studies on same-sex couples, but neither address any other LGBTQIA+ community nor why they chose only cishet couples to begin with.

It’s 2017. Why is it that LGBTQIA+ people still aren’t being involved in research? How meaningful is research when it leaves out an increasingly sizeable chunk of the population?

We need inclusive research

KLB Research logo with tagline: valuing diversity in academic research

I had the pleasure of seeing Dr. Karen Blair of KLB Research speak at the Guelph Sexuality Conference.

Karen was in college when she discovered she was a lesbian. As a result of taking sexuality courses, she began wondering why cishet couples were always the ones in research and books. So, like all great innovators, she started doing the research that needed to happen.

Dr. Blair even did a study right after the Pulse massacre to understand how this was affecting the LGBTQIA+ community. Listening to her speak about the Pulse study was incredibly profound. There’s even a follow-up study accepting participants.

What can we do?

We need more people like Karen – and more awareness of the work she and others do on inclusive research.

Share studies looking for participants whenever you can. Support or participate in The Pride Study. Stay tuned for when ORCHIDS gets going.

Demand more representation. When studies come out and don’t include anyone other than white cishet abled middle-class Americans, we have to speak up and share that this is not reality. This is not inclusive research.

Awareness Calendar for July

July is the awareness month for:

  • Cleft & Craniofacial issues
  • Cord Blood (esp. banking)
  • International Group B Strep
  • Juvenile Arthritis
  • Minority Mental Health
  • Tickling!

Don’t forget these important awareness days, too:

  • Heterochromia Day (12)
  • Stress Down Day (24)
  • National African American Hepatitis C Action Day (25)
  • World Hepatitis Day (28)
  • Orgasm Day (31)

Go forth and be awesome!

Want to add anything? Leave a comment below!

Vibrant: 4th of July Sale

a hand holding a sparkler against a dark background - white fancy text says "4th of July sale!" at the top while all-caps white text in the lower righthand corner says "save 25%off everything!! Code: Fireworks"

Our pals over at Vibrant are having a 4th of July sale starting TODAY!

You can save 25% off anything on their site using the code FIREWORKS. Hurry though – you only have until 11:59 pm Mountain Time on the 4th to shop!

Plus, you get free shipping on orders over $50. All proceeds go to support the Planned Parenthood of the Rocky Mountains, too! So what are you waiting for? Head over to Vibrant today!

It’s National HIV Testing Day

Did you know that one in seven people with HIV doesn’t even know they have it?

Part of why is the stigma that still surrounds HIV and AIDS. Many people seem to think the stigma has died out, but they’re neither involved in our communities nor paying attention. Better medications and prevention methods exist, but the stigma of HIV and AIDS remains. This is especially true in the deep south.

Today is National HIV Testing Day here in the states – and a day to talk about erasing some of that stigma.

I’ve been there. I’ve been tested a few times in my life. Each time, I shook in the waiting room before the appointment. Each time, I cried in the car on the way home. It’s as if getting tested meant I was admitting to some moral indiscretion that doesn’t exist.

Hell, one of those times was just before my wedding. I had not had any experiences that led me to exposure and still was told I needed to be tested pre-wedding. Neither hubs nor myself are generally exposed and the experience honestly left a bad taste in my mouth.

Each time, I received negative results.

What matters most in getting tested is having a good experience (unlike the last one I had!). Sometimes, all it takes is a cultural barrier to turn people off from getting tested regularly.

Want to learn more?

Check out the new HIV Risk Reduction Tool (RRT)

Learn more about PrEP (pre-exposure prophylaxis) and PEP (post-exposure prophylaxis)

Check out the amazing HIV and AIDS activists below:

Most importantly, find a test center near you and get tested!