A little bit about what it’s like living with Sjogren’s Syndrome:
You know that friend you have that’s hard to make plans with? The one that cancels at the last minute and doesn’t really get into explaining why? That friend who doesn’t want to get together after she’s run all her errands, picked up the kids, and made dinner? She says she’s too tired. What’s that about, people do that and more every day?
I Guess She’s Too “Important”
When you do see her, she might have been late and said she had to go back to get the bottle of water she forgot. She may have even forgotten to bring that thing you wanted to borrow. Geez. It’s like she doesn’t think other people’s time is important.
Sometimes it seems like she takes sick days every time you turn around. When she does make it to work, she’s taking like a million bathroom breaks during the day. Seriously, I guess working is “beneath” her. Maybe, actually, she doesn’t work full-time, or even part-time. You’re tempted to just come out and ask her what she does all day. I mean, she looks perfectly fine, there’s no reason to sit around when the kids are at school. Gawd, what a princess.
She does her grocery “shopping” online, and has someone at the store do it for her and bring it to her car. I mean, really? How lazy can someone be? She doesn’t even like to lift those heavy things she “shopped for” when she brings them home from the store. What, she’s afraid she might break a nail?
She’s ridiculously picky about what she eats. In fact, I wonder what trendy diet she’s trying now. Last time I saw her she was going gluten-free. We all know that’s ridiculous if you don’t have Celiac’s disease, right? She won’t even drink wine with her friends anymore. She used to be so fun, too.
Just Like a Princess
When she goes away for a weekend, she packs like she’s going overseas for a month. When she opens her purse she has to dig through a gazillion fancy hand lotions (or whatever that all is in there) to get to her wallet. Who needs that much stuff for just a couple of days? Oh that’s right, princesses.
Good grief, she goes to bed so early, too. Must need her “beauty sleep” – and wow, her before-bed routine takes forever. She seriously thinks she needs that much pampering every day after she did practically nothing? What the heck? Rumor has it, she takes naps, and gets an occasional massage. Yup, she’s special, alright.
Let Me Pull Back that Frilly Little Veil
Let me start by saying, I hear you. Each one thing by itself or in certain combinations could be a sign of “princess-ness”. But there’s another possible explanation she just may not be telling you. Let’s look closely and see what’s beneath all that stuff you see.
Sjogren’s Syndrome (show-gren’s) is an autoimmune/rheumatic disorder in which the immune system attacks the exocrine glands. What are exocrine glands, you ask? They are the glands throughout the body that secrete fluids into other parts of your body to make things operate smoothly. This ranges from your eyes and mouth (the hallmark symptoms) to your entire gastrointestinal tract, kidneys, bladder, liver, lungs, skin. Anything that requires moisture to work well probably has an exocrine gland helping it out.
When chronic systemic inflammation causes your immune system to attack exocrine glands, they can’t do their job. When the organs served don’t get the fluid they need, more inflammation results there too. So yes, as you’ve probably figured out, to function normally, people with Sjogren’s have to constantly take care of the things the exocrine glands can’t.
A High-Maintenance Body Means a High-Maintenance Life
That bottle of water she forgot when she was late meeting you? Yes, it’s really important to her. From her dry mouth to the abdominal pains she may get if she’s not fully hydrated, she needs a constant flow going.
All that stuff in her bag? Eyedrops, lip balm, moisturizer, gum, mouth lozenges, maybe even another bottle of water. Chances are she also has medications. Ones that help her produce tears and saliva, reduce inflammation and tamp down her immune system. Then there’s the required hand sanitizer because her immune system is out-of-whack – she’s wary of coming in contact with nasty germs. There could also be some type of steroid and vitamin supplements. And that’s just her purse.
Her overnight bag also probably has a moist heat eye mask, because when she goes to sleep her eyelids will stay stuck to her eyeballs without it. She may have a humidifier, nasal saline/gel, more heavy duty skin creams (a little hand lotion doesn’t cut it), extra layers of clothes due to cold intolerance, and a seven-day pill box with a tube of special gel to help her swallow those pills.
As with other rheumatic disorders, Sjogren’s Syndrome fatigue is an ongoing problem. She may have figured out that certain things are a bigger energy drain than others. When she’s used up, she’s used up. She’s learned to budget her energy through the day. She’s also probably learned the hard way that pushing through doesn’t work, and research is backing her up. People with disorders that cause chronic fatigue can deplete their energy more quickly than the average person doing the same things.
She may have figured out that grocery shopping may be all well and good, but then that’s the last thing she’ll get done that day.
Since there’s no “one” “Sjogren’s Syndrome Diet”, it’s possible she’s trying different diets because certain foods may trigger inflammation for her. She may have figured out that alcohol brings on a flare, even a little gives her a hangover, can’t combine it with her other medications, or knows it’s just plain dehydrating.
Why Doesn’t She Just Tell You?
She doesn’t look sick and she knows it. She has a disorder hardly anyone has heard of. She doesn’t tell you because it’s understandably, well, hard to understand. Sjogren’s Syndrome is one of those invisible illnesses that make the sufferer acutely self-conscious because things “shouldn’t” be so hard. That’s why she’s embarrassed to tell you about it.
There is also a very strong possibility that she doesn’t even know she has it. With Sjogren’s Syndrome, diagnosis can take years, or even decades because the isolated signs and symptoms can be varied and subtle. The whole package together makes life difficult, but it’s a puzzle not many doctors put together right away. Her doctors may think she’s one of the “worried well” and not take her complaints seriously. This makes her feel even more embarrassed because there’s “no reason” for her to feel this way.
I’m sure my description of your reaction is an exaggeration. Most friends don’t think that harshly of their friends. But, I assure you, she still worries about being viewed like a “princess” or something along those lines.
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If you’re ready to make some changes to start feeling better,