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March 22, 2018

Autoimmune Disease Awareness Month

I’m one of the over 50 million Americans who has an autoimmune disease, and even I didn’t know that March was Autoimmune Disease Awareness Month till someone I follow posted it on Twitter. There are over a hundred autoimmune diseases, and some of them are pretty nasty. I have one of the middling nasty ones, Sjögren’s syndrome, which does make life difficult some days.

An autoimmune disease is the result of the body’s own immune system attacking itself.  The different diseases attack different organs or systems, and that’s the main difference between them. But there is a lot of overlap.

Many people I love are in the same autoimmune boat, with diseases ranging from type 1 diabetes to lupus to psoriasis to Hashimoto’s disease.  We have some different symptoms, but the one thing we all have in common is that our diseases are invisible.

Most of the time we don’t look sick, but believe me, there are days when the pain is close to unbearable. And I’m used to a lot of pain because I had endometriosis for over 30 years. While the endo is not seen as an autoimmune disease, women who have had it are at a higher risk for the autoimmune diseases lupus, Sjögren’s, multiple sclerosis, and rheumatoid arthritis.

I learned in high school to get up, dress up, show up and live. My friends know that the brighter my lipstick, the worse I feel. Many days during my fertile years, I was tempted to stay in bed, curled into a ball. But how much life would I have missed had I done that? Oh, there were days that I didn’t get out of bed, but not as many as I would have liked.

I also know, though, that I have been blessed with a high pain tolerance and a strong sense of “get on with it.” As I joke, my mom went to the “Attila the Hun School of Mothering.” Seriously, though, we were taught to never complain, never make excuses, never drop the ball. It was difficult, and it wouldn’t pass muster as a parenting ideal today, but it made me who I am.

But that doesn’t mean I raised my son the same way, and it doesn’t mean I am unsympathetic to those who take a day off and stay in bed. In fact, one of the things I’ve had to learn is self-care.

Because many of our diseases are invisible, when you see us out on the street, you probably don’t know we’re sick.

That’s why I love the young celebrities who are talking about what’s wrong with them. When Daisy Ridley announced she had endometriosis, I was so sorry for her (it’s a pretty horrible disease that took me six years to get diagnosed), but happy that she put a face on the illness. Lena Dunham also has endo and has also raised awareness.

Selena Gomez has suffered greatly from her lupus, but being open about it has helped many young people understand more about it. Other public figures who talk about their lupus are Lady Gaga, Toni Braxton, and Seal, Sjögren’s is very close to lupus, so now when I say, “it’s like lupus,” more people know what I’m talking about.

Venus Williams, one of the greatest tennis players ever, is a fellow Sjögren’s patient. I keep telling myself, look at Venus. If she can do it…. Of course, she’s 20 years younger than me with a body that’s a well-honed instrument.

One reason that it’s important to raise awareness is that these are diseases that can take a very long time to diagnose. It takes an average of about three years for a Sjögren’s diagnosis. I was diagnosed in less than a year, only because I had an early lifetime of doctor’s poo-pooing my symptoms. Young people who complain of pain are routinely ignored. Women who complain of pain are routinely ignored.

My doctor did send me for a Hashimoto test because I’m overweight, and my brother has it, but when that test came back negative, as did a diabetes test, he thought I was just depressed. Depression is a symptom of many autoimmune diseases, but I’ve been depressed, and that wasn’t my main problem. I was so tired that I was falling asleep driving. That’s not depression.

I was relentless and kept pushing him. He finally sent me to a psychiatrist (for the depression), who asked me about four questions, and said, “You have Sjögren’s syndrome.” Symptoms my GP had chalked off to other things were immediately spotted by Dr. Atkinson.

He was an older doctor, so more experienced, but he also gets sent many autoimmune disease sufferers when their doctors can’t find a cause and get frustrated.

I don’t actually blame my GP for not spotting what was wrong with me. But he did get annoyed with me, and he did give up on me, and for that I’m a little more unforgiving.

Insurance companies make it difficult to root out autoimmune diseases, as well. Once something comes up positive, they are more than happy to stop looking, even though the cause of the illness isn’t found. It’s easy to say we have depression or exhaustion or or or.

I’m sure you haven’t read this far if you don’t suspect you have an autoimmune disease. If you think that, be relentless with your doctors. Know that it may take years to get a diagnosis. But most important, know that you are not alone.

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January 21, 2017

March on, Sisters and Brothers

I am not at one of today’s marches. I was invited by a niece to join her in DC, and I thought about it, but I’m doing a charity thing next weekend and taking time off work to do it, so two weekends off in a row wouldn’t work. She’s there, other nieces and my sister-in-law are there, and many former students are marching in NYC.

I’ve marched a lot in my time. I’ve been doing protest marches since the 70s, and have racked up marches in four countries. I’ve been out there for civil rights, police brutality, AIDS awareness, workers’ rights, anti-nukes, and I’m sure things I’ve forgotten. I’ve put in my time, and I’m frankly tired.

I also question the efficacy of marches. I think they had more impact in the 60s when they were something relatively new. But nowadays, I don’t think those in power pay attention to the “rabble.” It’s easy to say, “oh, Hollywood liberals spouting nonsense” or “That one’s always been an uppity troublemaker,” and ignore it. As for the rest, people who agree, agree. People who don’t, mock. I’ve not gone on much social media today other than Instagram, but I did see some “snowflake” comments last night and a wonderful “libtard crybabies” this afternoon.

But today I admit I was wrong about this one, and I wish I were there. This is massive, not only in America, but around the world. I think it would be very stupid and very dangerous to ignore this many women and men standing up for equality for women, for people of color, for LBGTQ+. But I think it was the pussy grab that really capped things.

Marchers today in their pink hats are calling for a stop to women being objectified and sexualized by men, especially men in power, who have a moral obligation to be role models, at least in public. While a reality TV star, Donald Trump said some things to women contestants that could have won him a lawsuit in the real world. Of course, in the real world, many women choose to ignore the overtly sexual comments and even aggressions in order to preserve their careers, though I am seeing a change in the behaviors of some people, which heartens me.

I am a very hard headed and realistic person as well as being the optimistic idealist. I revel in my duality most of the time. To those who say calling America a “rape culture” is hysteria, I say, oh really? I spend much of my professional life with women 18-26. I hear their stories of being groped, fondled, and even threatened and raped. I am 55, overweight and certainly nowhere near my prime, and I still get groped by men at work (not coworkers but customers) who think it’s all “a good joke”. Why do we get groped? Men think it’s their right.

When women use their voices on the internet, along with death threats come rape threats. We teach our young women how not to get raped. When I teach, I tell all my classes “don’t rape anyone. Now you can’t say no one ever told you don’t rape.” They laugh, but it’s uncomfortable laughter.

Young women on college campus and even in high school are raped every weekend. It’s called “date rape” but that’s just a pretty name for being raped by someone you know.

Most of these rapes are unreported. Why? Women have learned that they are the ones put on trial. What did they wear? What did they drink? Did they come on to him? If there is a conviction? Well, the Brock Turner case taught as to keep our mouths shut. It’s not worth the price. His future was considered more important that hers. And he was the rapist.

This is the 21st century. Back in the 1950s, my mother knew a NYC cop who made her go to a rape trial—one in which the rapist was caught “red handed”—and see how she was destroyed by the judge. That, for him, was a lesson she needed to see. That was over 60 years ago. Things haven’t changed and we’re still being shown that it’s best for us to keep quiet.

Sexual name calling, which can lead to sexual violence, is rampant.

Last semester there was a “Christian preacher” on my campus who called my students “whores” because they disagreed with him or wore what he termed revealing clothing. He called others “lesbians” because they wore pants. To him, that was an insult, to me, whatever. But that’s not protected speech under the law yet campus security did nothing about it. He told the young men they’d burn in hell, but he didn’t attack them sexually.

I’ve heard students I teach slut shame fellow students as well as celebrities. I’ve heard people trying to slut shame the new First Lady. I’m sorry. No. Double standards are not allowed.

There are very few sexual insults for men other than dick and maybe faggot, which are words that are also unacceptable.

Phew, I got angry there. I’ve had bad situations in my past, things I don’t talk in about in public not because I keep them bottled up, but because as I’ve seen over and over in society, when someone reveals rape, especially date rape, or sexual abuse, too many people see it as salacious gossip instead of someone’s personal pain. Or they see the person as a victim and pity them. I want no one’s pity. And I’m no victim. I was. But now I’m a warrior.

And hey, a message to a certain set of guys for whom the following shoe fits—think back to those incidents in college when you knew she didn’t want to, or she couldn’t speak for herself, but you did it  anyway. Know what? That was rape. Yes. Yes, it was. And she’s probably still really, really, angry with you. And she may just be ashamed. I remember having to physically bust in and save a friend who was passed out. Those guys who laughed at me trying to carry out the deadweight of a drunk and didn’t help me? I’m sorry, but you’re assholes.

Sorry, I went off on an angry rant there. And that just shows you how much anger is bottled up inside American women. The world’s women as we’re seeing today. I’ve worked very hard to purge the anger inside me, but every once in a while, it pops up and bites me in the ass like it just did now. I’m obviously still angry at those jerk fraternity brothers.

And now American women, at least, have a target for their anger. I hope someone in the government is paying attention. I hope these angry women go home and get to writing and working and watching their government. Maybe even running for office on the local, state or national level to more fully effect change. Politicians work for us, in theory anyway, and if we use our voices, some Congressional representatives might fear losing their jobs enough to challenge or do something positive to make America stronger and better.

To the women marching, I am there in spirit. To my bestie, sister-in-law, other friends and “nieces” and “kids,” you’re amazing, and I love you all. And to my blood nieces, especially, not only all of the above, but I am so proud of you, my darlings. Nana is up there singing and laughing and so proud that she passed on hell raiser genes.

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