I’ve been really struggling this winter with my Sjogren’s Syndrome. Not only does it flare periodically, making me extra tired and out of it, but it causes me to get sick (with colds, stomach viruses, etc.) more often, and those sicknesses, in turn, make my Sjogren’s flare. It’s a vicious cycle, and it is the worst in the winter because that’s when the most viruses are going around.

As a daycare teacher, I essentially work in a petri dish of germs. Infants don’t know to cover their coughs. Toddlers will gleefully hand you a booger they just picked. Everyone’s nose runs like a faucet and guess who’s job it is to wipe them all? Despite constant hand washing, loading up on vitamins, and taking just about every precaution I can think of, I inevitably catch every bug that goes around work.

My doctors used to tell me that the reason I got sick all the time was simply because I worked at a daycare. Before that, it was because I lived in a college dorm environment. Now, after 2 1/2 years of having this diagnosis, I FINALLY got a doctor to admit that constantly getting sick is related to my Sjogren’s. And I quote: “I do think it’s certainly possible that the Sjogren’s suppresses your immune system and makes you more susceptible to illness.”

Ok, so she didn’t come right out and say that’s the reason why, but it’s good enough for me. I’ve never understood how doctors could deny a connection between constantly catching bugs and having Sjogren’s Syndrome, because

1. Sjogren’s causes me to have a chronically low white blood cell count, and white blood cells are how your body fights off infections, and
2. If my body is already spending all of its energy and resources attacking healthy cells, doesn’t that mean there will be less energy and resources to attack the actual invading ones?

So although it won’t help me get sick less, it’s comforting to know that at least I can blame it on my Sjogren’s.

Dealing with this brutal winter of symptoms has had me reflecting a lot on my journey with chronic illness, and one of the main things I’ve come to realize is that no one is ever really going to understand what I’m going through unless they’ve gone through it themselves.

People can do their best to put themselves in my shoes, but when it comes down to it, they can never truly get it. If they ask me questions and are willing to learn about my experience and try to understand it, then they can sympathize a lot better, but the majority of people who don’t know me that well and aren’t invested in learning about my experience tend to say some pretty annoying things out of ignorance.

I totally understand that the things people say are out of ignorance and not insensitivity, but it never fails to rub me the wrong way. I’m able to let it go (most of the time) because I know people mean well, but if you want to learn what not to say to a chronically ill person, read on…

Things that aren’t helpful to say:

“You don’t even look sick”

I actually have a whole previous post dedicated to this one (you can read that here), but here’s the summarized version: saying that I don’t look sick feels like you’re saying that you don’t believe I’m really sick. It may seem like a nice compliment, but in reality it makes me feel invalidated.

Also, what does a sick person look like? How unkempt do I have to look to constitute being “sick?” There’s a reason they’re called invisible illnesses, and it’s because they’re FREAKING INVISIBLE!

“It could be worse”

Ah, the old “it could be worse” platitude. Sure, it can occasionally help put things in perspective, but really all it does is invalidate one’s feelings. I KNOW I could have it worse. I could have a chronic illness that causes severe joint pain, or requires invasive surgeries, or a terminal illness. But that doesn’t take away the sadness or anger that I feel about my own disease. I am entitled to my feelings about my issues, regardless of the fact that my issue isn’t the worst case scenario.

Specifically related to my Sjogren’s, I have heard “at least it’s not Lupus” a few times. I will be the first to tell you that, yes, I am grateful that I do not have Lupus. It can have dreadful consequences, such as kidney complications/failure and other extra glandular involvement. But Sjogren’s isn’t just Lupus’ puny little brother that can’t pack a punch. I’d like to point you to this paper, which states: “One study found less overall end organ damage in primary SD compared with systemic lupus (SLE) but concluded that the degree of functional disability was the same for both disorders.”

“I wish I had time to take naps”

And I wish I didn’t have to take naps. I wish I had the energy to work more and do more things. This one kills me, because people act as if naps are a huge luxury. Which, for the average person, they are. But for someone with a chronic illness that causes extreme fatigue, naps are a survival tool. We don’t nap out of laziness, we nap out of necessity.

If I could be out there working more hours, or volunteering, or traveling, or doing more exciting things, I WOULD BE. But if I don’t take my naps, I don’t even have the energy for the mundane things. Energy is a currency for me, and naps are like my savings account.

“I know someone who cured themselves with X”

“X” being anything from daily green smoothies, to meditation, to spinning around three times and waving their arms in the air. I understand that you’re trying to help in the only way you know how, by giving advice, but unless you’re my doctor, or you have the same condition as me and have had positive results with something yourself, I don’t want to hear about the magical unicorn dust that you heard on some talk show could cure fatigue. I’ve done a lot of research on my condition and the various ways people manage it, and if there was a magical cure, don’t you think I would have used it already?

“But you live such a healthy lifestyle!”

And why do you think that is? Because eating healthily, getting in regular movement, etc. help to lessen chronic illness symptoms. We will do everything in our power to feel better, and living a “healthy lifestyle” is one of the only things we can control.

Living a healthy lifestyle also doesn’t preclude you from potentially being diagnosed with a chronic illness. All the supplements and superfoods in the world cannot make you invincible. Venus Williams, a famous tennis player, has the same illness I do – Sjogren’s Syndrome (read about more celebs with chronic illness here). If a professional athlete’s healthy lifestyle isn’t enough to fend off an autoimmune disease, then I don’t think any healthy lifestyle is.

“But you’re so young!”

Yep. But chronic illness doesn’t really take age into account when it chooses it’s victims. My disease, Sjogren’s Syndrome, is most common in women over 40. I was diagnosed at age 20. Don’t you think I wonder why I was only half the usual age when I got it? Don’t you think I worry about how this disease will progress over the course of a lifetime? You bet your boots I do!

These are all things that I have heard, but that people with many other chronic illnesses have probably heard as well. I’m sure there are plenty of other annoying comments that come along with each specific disease, so if you have one of those, please feel free to leave it in the comments!

Also, you may now be wondering: what should I say to someone I love who has a chronic illness? And my advice on this is: instead of worrying about what you’re going to say, worry about how you’re going to listen. You can’t possibly understand what your loved one is going through, but if you’re willing to really listen to them and hold space for how they are feeling, that is going to make the biggest difference.

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