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.

Some Timely Advice for College Students, Mostly Freshmen

I just realized that it’s been 4 months since I’ve blogged. It’s been that kind of year. But today as I was preparing a weekly “letter” for my online students, I started to pass out advice not only for writing the final draft, but for surviving the last weeks of term.

Although this has nothing to do with culture, culture clash or other things I usually write about, I decided to post it because frankly, it’s good advice.

So, here you go. I teach English, but this works for all students, especially those facing writing projects:

You’ve done the outline you’ve done the research. Now it’s time to write the first draft.

My best advice to you? “Get it down, then get it right.” That was something I learned from a master teacher when I was in grad school learning how to be a composition teacher (yes, I did take a number of classes on how to teach and how to teach on line.)

What does that mean? It means try very hard to write your first draft without stopping to correct. Get those ideas down on paper because you can always polish them up later. Often when we write we agonize over a sentence and in doing so forget where we were going with the thought. You have the information in your head. Just write it!

Then give it a day to “settle” and step away from it to clear I from your head. Then go back and work on the revision. Clarifying the logic, making the words pretty, making sure you have enough evidence. THEN go back and edit it, preferably on a different day. Again, you want to give your brain time to “forget” what you’ve written. See, our brains are smarter than we give them credit for. They know what we want to say, so when we read something we’ve written, our brains see what we think we wrote. By giving ourselves some time off, it becomes a little harder for our brains to trick us into seeing what we want to see.

And for people with learning disabilities like me, the end of term means stressing and rushing. I find myself struggling more and more with my dyslexia under these circumstances. I force myself to slow down and calm down. Breathing helps. I know you’re breathing, but when we’re stressed, we breathe much more shallowly, which deprives the brain of the oxygen it needs to function at its best. Take some good deep breaths, in slowly, out slowly, to oxygenate your brain.

I’m a big believer in the science of high performance. Our bodies are the greatest machines run by the most brilliant computers on earth. We can’t run them on substandard care and expect their peak performance. If your life is anything like mine, sleep gets cut first, but I am also trying to avoid junk food, eating lean proteins, mostly vegetarian, unrefined carbs and fruits and veg.

Eat breakfast. It really helps! During the week I don’t have much time, so I make a peanut butter on a whole wheat sandwich thin and bring my travel mug of tea. Filling and easy. And a multivitamin won’t hurt. I actually take a lot of different vitamin, mineral and herbal supplements to support my crazy life, especially D as I don’t drink milk. I had low D this summer and was exhausted. After a blood test and a prescription I was much, much better.

Sorry about the life advice, but I teach humans, not just names on a screen. I have a lot of experience, so I want to share. I would be saying the same in a f2f class!

So, that’s what I said to my students and I share it with all students. Good luck with the end of term.

I will be back soon. I have SO much to say but no time to say it. Hold on to your hats, folks, the Broad is coming back!