10 Not Standing Still's Disease w/ Kirsten Schultz (episode page)
Description: In this week’s episode, Cara talks to Kirsten Schultz of the blog Not Standing Still’s Disease about her rare condition, Still’s Disease, and where it fits into the picture of autoimmune arthritis. They both make statements in response to last week’s Planned Parenthood attack, and they talk about growing up sick, blogging, what Kirsten hopes to do when she finishes her masters degree in Healthcare Administration, learning to be nice to ourselves, and PTSD.
Hey there and welcome you to In Sickness + In Health—a podcast about chronic illness, disability, medical traumas, and everyday uncomfortable healthcare experiences. My name is Cara Gael; I’m not a doctor or medical professional, I’m just a person and a patient who really wants to talk about this stuff more.
If you’re new to the show, welcome! Nothing said on this show should be considered medical advice. If you’re experiencing a medical issue, please seek qualified medical help. I know the system sucks, but I wish you a lot of luck. Every person is different, even within disease groups, so none of my guests should be regarded as official representatives or spokespersons for their conditions. Please respect their very personal choices, and unless they ask for it, please don’t make suggestions about treatments or lifestyle changes. As will come up again and again on this show, unsolicited medical advice is almost never not annoying.
This week’s episode is part one of my two part conversation with Kirsten Schultz, the blogger behind the Not Standing Stills Disease blog, where she shares her insights, experiences and resources on her rare condition and autoimmune arthritis, trauma and Post Traumatic Stress Disorder, and—as you’ll hear about in part two—sex education for the chronically ill.
While I had heard of Still's Disease before, I’d often heard it described simply as something “like Rheumatoid Arthritis,” with little other explanation, so I asked Kirsten to explain a little bit about how the two conditions differ, and what stills disease actually is.
[Kirsten clip: early life - having to develop coping mechanisms that young]
Something that Kirsten and I have talked about that didn’t get recorded is our experiences with Planned Parenthood. We’ve both been patients there, and Kirsten volunteered with them as well. So when the events of last week happened, we both had quite a lot of feelings to process.
When I started this project, I did not want the podcast to get political, because arguing about politics with people who have made up their minds on a highly contested issue is something I don't like to waste my spoons on. But like I said in last week's episode: how can I do a show about health without talking about the systems that are failing the patients I talk to? How can I do a show about health and not talk about the issues affecting access to basic healthcare services? How can I do a show about health and not talk about an event that is a direct result of the slow and steady march to destroy women's access to basic healthcare and bodily autonomy?
This isn't about being pro-choice or pro-life, this is about access to basic healthcare. I fully respect the views of those who believe abortion is immoral; it is a very important part of my pro-choice stance that women are able to decide for themselves whether or not abortion is the right choice for their bodies. We don't have to agree on this. What I don't respect is when people try to interfere with or restrict access to healthcare services—of any kind. I do believe it is wholly unethical and immoral for anyone other than a woman, her partner, and her doctor to decide what the "right" course of action is in a given situation. Others disagree, and that's okay, but reinforcing stigma and inflammatory rhetoric about this stuff is irresponsible and immoral.
Last Friday, a gunman entered a Planned Parenthood facility in Colorado Springs, CO, and had a stand-off with law enforcement that lasted more than five hours. After he was taken into custody, it was revealed that three people had been killed, and nine wounded, in the exchange of gunfire. The dead included a mother of two, an Iraq War veteran, and a police officer; my thoughts are with the loved ones of those killed and injured, those who no longer feel safe accessing what are supposed to be safe and legal healthcare services, and the staff and volunteers of reproductive health clinics nationwide.
This attack left me at a loss for words. My anger and sadness has made it hard for me to even form a coherent sentence about it—but I am trying, because neither healthcare providers nor patients should have to fear for their lives in accessing vital healthcare services. Whether it's for the 3% of Planned Parenthood services that include abortion or the 97% of their services that include Pap tests, breast cancer screenings, contraception, or testing for sexually transmitted infections from Syphilis to HIV, reproductive health clinics should be no place for domestic terrorism—and yet, so often they are targets for threats and violence.
The US has a long history of clinic violence; the last death resulting from such attacks occurred in 2009, with the murder of Dr. George Tiller, who was shot in the head while serving as an usher during the Sunday morning service at his church. Threats of violence against doctors and reproductive health clinics have escalated sharply in recent months, increasing exponentially since July, when a series of since-debunked videos allegedly showed Planned Parenthood employees arranging to sell fetal tissue from abortions on the black market.
As I mentioned, only 3% of the services Planned Parenthood provides include abortion. Women who receive these services are given the option to make a voluntary donation of the resulting tissue—that would otherwise be discarded—to medical research that has benefited millions of people. By law, clinics cannot profit off of these donations, and collect fees only for processing and transporting the tissue. All of the investigations into these allegedly illegal practices—and there have been a bunch of them that have been launched since the videos were released—have turned up no evidence of wrongdoing on behalf of Planned Parenthood. Due to the controversy. Planned Parenthood has since stopped collecting even the legal transportation fees for such tissue altogether.
Back in September, The New England Journal of Medicine, widely considered among the most respected of medical publications, published an op-ed in response to the videos, which were already starting to be debunked. It read:
"We strongly support Planned Parenthood not only for its efforts to channel fetal tissue into important medical research but also for its other work as one of the country’s largest providers of health care for women, especially poor women. In 2013, the most recent year for which data are available, Planned Parenthood provided services to 2.7 million women, men, and young people during 4.6 million health center visits. At least 60% of these patients benefited from public health coverage programs such as the nation’s family-planning program (Title X) and Medicaid. At least 78% of these patients lived with incomes at or below 150% of the federal poverty level. Planned Parenthood’s services included nearly 400,000 Pap tests, nearly 500,000 breast examinations, nearly 4.5 million tests for sexually transmitted illnesses (including HIV), and treatments.
The contraception services that Planned Parenthood delivers may be the single greatest effort to prevent the unwanted pregnancies that result in abortions.
It is shameful that a radical antichoice group whose goal is the destruction of Planned Parenthood continues to twist the facts to achieve its ends. We thank the women who made the choice to help improve the human condition through their tissue donation; we applaud the people who make this work possible and those who use these materials to advance human health. We are outraged by those who debase these women, this work, and Planned Parenthood by distorting the facts for political ends."
The videos were dubiously championed for political gains by many on the right, who used them to make erroneous points in the republican debates, and even used them as justification to pass a measure to defund Planned Parenthood in the House of Representatives, which thankfully failed in the Senate. This, even though Planned Parenthood is barred from using any federal money for anything related to abortion services.
Independent analysis of the videos has since revealed they were heavily edited with highly manipulative shooting and editing techniques—which is shockingly easy, even if you don’t know much about video editing. If you do, as I did, you can tell the videos are bogus even within seconds of viewing, and it only gets more obvious from there. Other analyses of the more grotesque elements of the videos show that some of the footage of what was claimed to be an aborted, "fully formed fetus" was actually a premature delivery. This footage was used without the consent of the family, which not only violates the privacy protections of HIPPA, but is a gross violation of any ethical standard.
The discrediting and debunking of the videos was poorly covered, if at all, by many media outlets. Instead, the mainstream media, in tandem with politicians, have only continued to fuel the flames of polarity and extremism, which seems to have contributed to this act of domestic terrorism.
The chairwoman of Physicians for Reproductive Health, an advocacy group working to improve access to comprehensive reproductive health care, had this to say in response the attack:
"This campaign of terror—waged over decades against those of us who provide this critical care—is reprehensible and must end. The poisonous environment that incubates this terrorism, and the passivity of elected officials who tolerate it, must end as well.
This morning, our hearts are heavy but our resolve is strong. And this morning, just as we did yesterday morning, doctors, nurses, and clinic staff went to work at reproductive health clinics across our country.
We are there because our conscience compels us to be there. We are there because we see our patients’ need and we must respond. We are there because no act of violence is stronger than an act of compassion. And that is what we do for our patients: we serve them not only with excellent medical care, but with the compassion they deserve."
I want to thank the staff and volunteers of Planned Parenthood, and other reproductive health clinics, who risk their lives every day to keep their patients safe and their clinics open. Planned Parenthood has continued to fight for the millions of people to whom they serve safe, legal, and necessary healthcare.
I have been among those millions on more than one occasion. Planned Parenthood was there for me when I needed them, providing safe and affordable access to healthcare I urgently needed at the time. I have always supported Planned Parenthood, but they need our support and our voices now more than ever, which is why I continue to stand with Planned Parenthood.
Kirsten does as well, and she sent me this statement:
"In eighth grade, I watched a wonderful presentation from a local sex educator with Planned Parenthood and so enjoyed how she made a rough topic something funny and entertaining. As I grew and took an interest in sexuality in our society at large, I began to volunteer with Planned Parenthood in high school. After all, I was utilizing their services for protection against pregnancy and sexually transmitted diseases and writing an extended essay comparing the sexual education systems of the United States and various European countries. I fell in love with the wonderful sex-positive views therein and the amazing people I had the chance to collaborate with. Once I was in college, I had moved and worked so much that I wasn’t able to volunteer, but still utilized their services to be safe.
Being such a supporter and lover of Planned Parenthood for nearly all my life, the shooting at the Colorado Springs facility struck me to my core. I remember as a child hearing about bombings at clinics and how frightening that was. I remember being struck by how horrible that must be; to disagree with someone’s views and actions so much you’d rather kill them than end the dialogue and walk away. Despite the more recent political or financial attacks on Planned Parenthood, I thought we were past this violence. I thought that, as a society, we were grown up enough to use our words.
I should have known better, given the long history here in the United States of fighting this organization and its values.
The misconceptions out there about Planned Parenthood have played into the shooter’s motives from his own statements thus far. The mean-spirited and unresearched words spouted from the mouths of the few have driven a man to take lives into his own hands – and to end them. On social media, we see others holding him up as a hero instead of mourning lives lost and forever changed across the country by this act of domestic terrorism.
I am so saddened by this loss, by the fear it instills in us. I’m frightened to see how easy it is for people to harm others with no thought to the gravity of lives lost and harmed. I’m puzzled by the juxtaposition of being pro-life but not caring for lives lost. I’m angered by others supporting and celebrating this violence with no thoughts for the families who have lost their loved ones, no worry for the children growing up without a mother of father.
There is so much I could say, so much to convey, that it can’t quite all fit together.
Compassion is what we need, now more than ever, no matter which side of the abortion debate you land on.”
Today is Giving Tuesday, a day where people are encourage to make charitable contributions to the organizations of their choice. The Planned Parenthood Action Fund and Planned Parenthood of the Rocky Mountains are a great place to start. I’ll include a blog links in the show note that contain both my and Kirsten’s official statements on Planned Parenthood, sources for the information I’ve discussed, as well as a list of a number of other organizations worth donating to.
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I hope you enjoy this episode, and tune in to part two in a few weeks where we’ll be talking about sex and Kirsten’s advocacy work.
You can find more resources about PTSD and some of the other stuff we talk about in this episode in the show notes and on the blog post for this episode. Thank you for listening, and stay tuned for everything we have to come. In a few weeks, I’ll be putting up part two of this episode where we’ll be talking about chronic illness and sex and some of Kirsten’s advocacy.
I hope you’re not feeling too terrible, and remember to be excellent to yourselves and each other.