What Not To Say to Autoimmune Patients And Then What to Say

I just reblogged a piece by a friend who has an aggressive stage IV cancer on what to say to folks with cancer.

The flip to this, of course, is what not to say.

My disease most likely won’t kill me, so my situation is not as, well, terminal, but as someone with an invisible illness, I’d like to give a list of things not to say to folks who suffer from autoimmune diseases and other invisible illnessess.

1. “You don’t look sick.” Thanks. I try hard not to. And my symptoms are pain, dryness, fatigue. For me, a slab of Maybelline, a handful of meds, and I’m good to go. Most days I look “healthy”. And most people who make this comment use a tone that implies that I’m not really sick because I “look” healthy.  On the other hand, telling me I look good is an entirely different matter. Lie to me all you want!
2. “Autoimmune diseases aren’t real.” Seriously. People have said this to me. To them I usually say, Google it.
3. “You just need to eat better/vegan/take vitamins.” Because of my illness, I voluntarily eat better than about 85% of Americans. And I take vitamins. My body is attacking itself. Becoming vegan isn’t going to cure me or the 50 million others with autoimmune diseases. In fact, the autoimmune protocol diet, first developed by the Mayo Clinic, cuts legumes and grains out of the diet. Most of us already cut out inflammatory foods because dietary changes help, but diet alone won’t do it.
4. “There’s no such thing. What you really have is _____.”  No, there is such a thing as Sjogren’s syndrome (or fibromyalgia/lupus/RA/ad nauseum). Yes, people have told me that I have a “made up disease”. See Google comment above.
5. “Hope you get better soon!” While the wishes are lovely, I will most likely never get better. Some days are better than others, and I’m trying to maintain the status quo, but this comment, while well-meaning, shows a disregard for the seriousness of the illnesses.

On the whole, don’t assume you know more about what’s going on with us than we do. Unless you are a rheumatologist. The first time I went to my new GP and new psychiatrist, they had to google Sjogren’s before they came in the room! Most medical professionals don’t know what some of these illnesses are because they are so rare. Just because you read an article online, don’t assume you know all there is to know.

So what should you say or maybe do?

1. Anything that shows real sympathy is nice to hear, from “I’m sorry you have to deal with this” to “Dude, that sucks!”
2. None of us really mind the question, “what is Sjogren’s (or any of the other invisible illnesses) and what are the symptoms?”  Or maybe Google it on your own and then ask us questions. Sometimes it’s nice to have someone be interested.
3. “Can I carry that for you?”  I hate to ask for help, but when it’s offered spontaneously I’ll often say, “ok, thanks!”
4. What I really love are friends that don’t give up on me. I’m not talking framily-level friends. They never give up. But many times I have to say no to invitations. Friends who steadily keep asking, take my rejections in stride, and don’t get irritated with me truly warm my heart (shout out Erin Cronican! I love you!)  When I’m working, there are days it’s all I can do to get to work, do my job, and come home.
5. When our flare ups are really bad and we miss work/school/whatever, the offer of help is always welcome. Many of us are stubborn gits (or that just might be me), but there are times when yes, I really could use a half gallon of almond milk, thank you.

I hope this helps you. It certainly got some stuff off my chest.

 

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.

Dealing with Change

I truly am like a bad penny. I keep turning up, even when you think you’re done with me.

I am going to make a concerted effort to be back. Last I posted it was February, and I wrote about possible treason. Here it is September, and the same story is blowing up the news. The administration is still in power. The stories get scarier. And Congress is still full of spineless wonders. That’s what I called them in my penultimate post.

But I am a very different person than the one who last wrote. Well, yes and no. Last February I was midway through a journey that got settled in June. I’m going to recount it here because much has happened, and because of it, I am learning to live with a new reality. And not just the political one.

It’s been a whirlwind. I’ve written in the past about my son being ill. He just wasn’t getting better, and the doctors were starting to give up hope. He was slowly sliding into a life of permanent disability.

By May, symptoms were at their worst, and on Mother’s Day, he was an hour or so from death. And that was the best thing that could have happened to him.

Seems that to treat this and that, he was on four medicines that were leeching his potassium. The morning of Mother’s Day, he and I were out walking the dog when he fell on the gravel path. It’s a hill, we laughed about it as he was unhurt, really, and I went on to work. By that afternoon, he had to crawl to the car so my mother could take him to ER. By the time they’d made the 5 minute trip, he couldn’t get out of the car. By the time I got there 3 hours later, his arms didn’t move. Next, they told us, it could have been his heart stopping had he not come in. He was berating himself for making a fuss.

After 3 days in the hospital on IV potassium and 3 more weeks of trial and error, his potassium is stable. He is as good as he’s gonna be. Many of his symptoms were of low potassium, but because they are also the symptoms of the things he’s being treated for, they were overlooked.

We found the answers and now it’s just time.

But at the same time, I was seeing doctors because I knew something was off. My GP was getting frustrated, specialists ruled out most major diseases, and to make a long story short, finally, it was discovered that I have Sjögren’s Syndrome.

What’s that, you say? One of the most common auto-immune diseases in the US. But because this is me we’re talking about, no one knows what it is (I have a habit of flummoxing doctors).

And while I’ve been searching for answers since July ’16, things have really accelerated. In fact, a test this past April came back “suggestive, but not definite,” but the test another GP ran in June came back “hell, yeah!”

Sjögren’s most prevalent symptom is dry eyes and dry mouth. Doesn’t sound too bad, eh? Actually what got me to the doctor was the fact I was falling asleep driving. Literally. I thought that might be a bad thing. Symptoms include profound fatigue, muscle and joint aches, depression, peripheral neuropathy, and memory problems. I’ve got all of these symptoms and a few more.

I was working as a thrift store manager for a not for profit, a surprisingly physical job, and my doctor didn’t want me doing it any more. I was also a part time professor, as that’s my “real” job, and living in Tennessee because of my son’s health.

Presto change-o. We are now living in the Bronx again, and I’m back to being a full time part time worker. I teach five courses at two schools, but that keeps body and soul together. Son is back working two part time jobs. He’s not ready to go back to his career, which is acting, but he’s slowly but surely getting better from being severely ill for five years. It’s a process.

I used to be one of the most high energy people around. I now spend more time in bed than ever. I used to sleep 5-6 hours a night and not break a sweat. Now I’m exhausted if I don’t sleep for 8, and I honestly try for 10 a night. It’s a bone deep physical exhaustion. The depression doesn’t help. I’m taking meds for that, which help but don’t fully alleviate it.

I’m usually a very private person, but I’m making a concerted effort to be more vocal about the struggles of living with Sjögren’s. I spent the years 15-48 living with endometriosis, another “invisible disease” that upended my life, and I learned then that more people need to learn about these things. Young women today are still being told the same sexist claptrap I was told when I had active endo. If sharing my story helps someone or raises awareness, then talk I shall.

Luckily, I feel fully alive and engaged when I’m with my students, bless them. My passion for teaching is still burning bright. My passion for social justice and change is still burning, but I’m learning how to live with a disease that’s getting more and more debilitating. To be honest, this is messing with my head, too.

I work harder than ever at remaining an optimist, about being positive. I know that getting back to my writing is a big part of this journey, so I’m back.

I can’t help but be political, but I am not sure how this blog is going to evolve. All I know is that I feel compelled to write, so write I will,

The Broad is definitely back yet again.