13 Reasons Why (You Should Go to the Lupus Walk)

1. You can get some exercise. Full disclosure: I’ve never actually crossed the finish line at the lupus walk (because I have lupus). I mostly show up an hour late, sit in a lawn chair, and eat the free breakfast tacos and muffins. I’m only speculating about the exercise part and can’t speak from experience.

This year’s walk takes place at Walter Hall Park. I wasn’t able to find out exactly how far we’ll be walking, but it’s usually 3-5km. Don’t feel like walking that much? Sit with me and eat tacos.

You can look up the route here and Walter Hall Park here.

2. You get to meet lots of people with lupus. People with lupus are known for being really fun to hang out with. If you don’t believe me, you can ask my mom and my best friend.

3. People with lupus tend to have memory problems. If you wear an ugly tracksuit, we will absolutely forget about it the next day.+

little-britain

 

4.You get a free T-shirt (if you register and pay the $20 registration fee). Register here.

5. You can bring your dog. In fact, you can even sign your dog up to walk under the LuPAWS registration for $10 and get a bandana for your pet to wear. My dogs go to the lupus walk every year to be supportive (and because they also like tacos).

doglupus

6. The Galveston Walk is called the “Walk to End Lupus NOW.” I’m always intrigued by the “NOW” at the end. If I finally manage to cross the finish line, will we all suddenly not have lupus anymore? Will we magically transform like The Beast did when the last petal fell off the enchanted rose? This remains to be seen, but at the very least, we will have raised money and awareness for a worthy cause.

7. Did I mention breakfast tacos?

taco

8. You can help raise money for people with lupus. Funds raised go towards research and providing medication for patients who can’t afford it.

9. You don’t have to have lupus to participate. Lupus isn’t contagious, so you will still not have lupus when you leave.

10. You can brag to your friends about how productive you were on Saturday morning. You can exercise, raise money for charity, and eat a healthy breakfast- all before 9am. (The walk starts at 7:15am).

11. You can also show up much later than 7am. Anyone who knows me is aware that the only reason I’d ever be out of bed at 7am would be if my house caught on fire. I’m definitely not going to be lacing up my running shoes at 7:15am. I typically show up fashionably late around 8:30 or 9- and you can, too!

12. Participating in lupus walk helps you understand lupus better as well as increases awareness of the disease in the community. If I could pinpoint the one thing that would most improve my life as a lupus patient, it wouldn’t necessarily be better medication. It would be awareness. Having to explain over and over why I don’t do mornings, why I can’t be around you if you’re sick, and how I actually do have a real illness even though I “look fine” is exhausting. If everyone took one small step to educate themselves and others about invisible illness, the lives of sick people everywhere would be just a little easier.

13. Walter Hall Park is full of pokestops. If you visit enough of them, you might even get a king’s rock or metal coating to evolve your onix or polywhirl right in time for the Rock Pokemon Migration- umm…I mean…that’s what someone told me. I don’t play Pokemon Go myself.

pikachu

The Five People You Meet When You’re Sick

Disease Fetishists

Favorite Phrase: “I could never be as brave as you. You’re such an inspiration!”

There’s a line between expressing recognition of someone’s perseverance in the face of adversity and gushing about their bravery in getting dressed and leaving the house like everyone else. Disease fetishists flirt with this line in every interaction with you.

 

Are you able to work despite being sick? You’re not just trying to pay the bills; you’re a shining example of dedication and perseverance.

 

Remark that it’s a nice day outside? Your ability to find joy in the little things despite the crippling pain of your everyday existence is a lesson to healthy people everywhere to put their problems in perspective.

 

Choose the sugar free latte over the one that gives you a migraine? You’re not just being sensible- you’re a goddamn pillar of self-control.

 

I don’t always want to be an example, and I don’t need a little voice following me around heaping praise on me for being brave enough to do my laundry.

 

laundry

For me, laundry tends to be less of an act of bravery and more of an act of desperation.

 

How should you treat the sick girl in your life? Just like anyone who has problems in their life. In other words: just like everyone else.

 

Sympathy Addicts

Favorite Phrase: “Oh, you poor thing!”

The typical sympathy addict can be found with a box of tissues in the front row of a theatre immersed in a tear-jerker about two teenagers with cancer who fall in love. You can’t check her facebook page without seeing pictures of her visiting a nursing home displayed prominently. When she hears through the grapevine that you’re sick, she’ll overwhelm you with cards, emails, and requests to visit, even though you’re barely more than acquaintances and haven’t seen her in over a year.

 

What seems like kindness at first glance reveals itself to be something else entirely upon closer inspection. The sympathy addict gives not for the sake of giving, but to satisfy some bizarre emotional craving. Some sympathy addicts want to (often publically) pat themselves on the back for their boundless charitability in thinking of the poor sick girl. Others crave a hit of tragedy that they don’t get enough of from a Nicholas Sparks novel. The worst kind of sympathy addict will never admit that deep down, they feel a sense of superiority when they see someone in worse circumstances than themselves.

 

Brene Brown describes sympathy as an emotion that drives disconnection. Sympathy is like that bulky, itchy, ugly sweater that your great aunt knit you for Christmas one year. It’s awkward, uncomfortable, and ultimately more for the benefit of the giver than the gifted.

 

Sick people don’t want your sympathy. We aren’t “poor,” we aren’t “little” (especially not after all those steroids), and we aren’t “things.” We want someone to listen, not use us to feed an emotional need or simper at us like we’re some baby bird that fell out of its nest.

 

We could have been promoted at work, met the love of our life, or just enjoyed a really great cup of coffee. But we’ll never be more than that sad little sick girl in the eyes of the sympathy addict.

 

Awkward Arnolds

Favorite Phrase: “…”

The mute cousin of Negative Nancy, Awkward Arnolds are the most common type of person you meet when you’re sick. They’re the co-worker who won’t look at you in the meeting or the neighbor who scurries into her house with her groceries when she used to talk your ear off.

 

I didn’t fully understand why acquaintances and classmates suddenly grew so aloof after my diagnosis until a full five years into my illness, although I should have. Once after a high school classmate’s brother died in a motorcycle accident, I couldn’t meet his eye for a full week. Seeing something bad happen to someone you know can cause deep discomfort. Rather than wade through the discomfort, some people are paralyzed by it.

 

See a bit of Awkward Arnold in yourself? Try just saying hello, no matter how uncomfortable it feels. Remember that tragedy isn’t contagious. The words will come easier each time you speak them.

 

Mr. Fix-Its

Favorite phrase: “I know someone with your condition who took homeopathic drugs/smoked pot/did yoga/danced naked under a full moon, and they’re completely cured.”

For every problem you have, a Mr. Fix-It has at least five solutions. He’s usually so overcome with eagerness to share his wisdom he’ll interrupt you before you’ve even finished explaining the problem.

 

Despite the label, Mr. Fix-Its are not limited to just the male gender. You’ll find just as many of these helpful little fairies while applying lipstick in the ladies room or at your women’s group at church as you will out in the general public.

 

The True Friend

Favorite phrase: “How was your day?”

Disease is to your social life what a gardener is to a flower bed; it removes the weeds and leaves the flowers to grow and flourish.

 

You’ll know her when you see her. She’ll be the one sitting next to you in the ER, behind the wheel on the way to the doctor’s appointment, or the voice over the phone on one of the worst days. She can make you laugh and listen to you cry. When illness pushes others away, it pulls her closer.

 

When you’re chronically ill, you don’t know what the next year, month, day, or even hour might bring. But you know that your friend will be there for all of them.

 

Oatmeal for Dinner

I ate oatmeal for dinner yesterday. Sometimes I eat oatmeal when I’m hungry but don’t feel like cooking. Living alone and not having to prepare meals for anyone but yourself can result in some unusual eating habits. Yesterday, though, I had a fridge full of food- specifically beef and bell pepper stir fry over white rice. I’d cooked it the night before and then tucked it away in the corner of the refrigerator.

 

hungry violinist

Smart musicians don’t play concerts on an empty stomach.

 

I went with the oatmeal over the beef stir fry not by choice, but because lupus had decided to have a raging party in my stomach. That’s ok; if I had to rank all of my lupus symptoms, I’d list stomach issues as one of the least unsettling (pun intended). Throwing up occasionally won’t ruin my day, and as inconvenient as running to the bathroom is, it’s far less debilitating than fatigue, insomnia, or brain fog.

 

Dont-mind-me-Im-just-running-to-the-bathroom-for-the-15th-time-today (1)

On the bright side, at least I’m getting some exercise.

 

An hour and a half before I had to get up on stage with four of my colleagues and make Mozart’s G Minor Quintet after three rehearsals sound easy, I decided solid food wasn’t for me. Nowhere in my part had Mozart indicated that the violist should run offstage holding her stomach.

 

avant-garde-musical-symbols

That kind of theatrics is for contemporary composers.

 

My disease has disappointed me and crashed the party many times throughout my life- but oatmeal will never let me down.

 

Just as I had hoped, oatmeal for dinner quelled the riot in my gut. The Mozart flew by with no awkward breaks. As I walked off stage with the rest of the ensemble, I mentally patted myself on the back for finding the perfect panacea.

 

oatmeal

This program brought to you by Quaker Oats.

 

When I was first diagnosed eight years ago, I would have felt quite differently about eating oatmeal for dinner. Frightened by the disturbing symptoms that mysteriously come and go, I kept myself afloat by imagining a future in which the fatigue had disappeared into thin air and the nausea had faded to a memory. I wanted my life back. I wanted to be normal again.

 

Eight years later, my definition of normal has shifted, mutated, stretched to include whatever my life is now.

 

Will I ever be able to just go play a concert without some sort of minor emergency beforehand? Doubtful.

 

Will I ever get to stop putting up with this stupid disease and just live my life?

No.

 

Will I ever reach a point where I accept that I have limitations and find ways to work around them?

I’m getting better everyday.

How to Come Out of the Closet About Your Health Condition: Work Edition

If you’re like me, the thought of letting your coworkers or boss know that you need help makes you want to crawl under your desk and hide.

 

0911-woman-hiding-under-desk.preview

“I’ll come out when it’s over.”

The first time I let an employer know that I was unable to do something because I was sick, I was literally so nervous my hands were shaking. I worked at small music school where I was expected to start teaching at 9am. I struggled with fatigue and nausea in the mornings; driving to work at that hour literally made me so sick that it took about three days to recover.

 

I worked hard to be a good teacher and I loved my job. I was also new to life with a chronic illness and had heard enough “but you don’t look sick”s and seen enough eye rolls to be hurt by what felt like others’ skepticism and indifference.

 

I worried that my boss wouldn’t understand. Would he doubt my story because I didn’t look sick? Was not being able to start at 9am a deal breaker? Would he let me go and hire someone healthy?

 

Ultimately, my boss accepted my disclosure with kindness and concern. I was able to move my students later in the day the very next week. I left his office feeling almost silly that I had spent so long worrying about the consequences of disclosing my health condition when I could have been starting work later and getting the rest I needed.

 

Getting the accommodations that you need will help you to be more productive, healthier, and happier at your job. Here’s how to do it:

 

Know when to disclose

To be clear, disclosure at work isn’t something that you have to do if you don’t want to. Unless I’m friends with my colleagues, I don’t typically share details about my personal life. Other people would prefer to be more open, and that’s fine, too.

 

However, when your health condition interferes with your ability to perform your job in the manner in which you always have, it might be in your best interest to disclose- and the sooner the better. You want to avoid being seen as unreliable or flakey, so open communication in this area is key.

 

Explain your condition.

“I have lupus, a chronic autoimmune disease.”

 

Use the medical diagnosis for your condition. If you don’t yet have a diagnosis, explain that also.

 

“I haven’t been feeling well, and I’ve made an appointment with an endocrinologist/rheumatologist/gastroenterologist. I’m hoping to have some answers soon.”

 

Then, explain what this means in terms of symptoms.

 

“This means that I have been feeling very fatigued/nauseous/sore. I’m having some issues with concentration/sitting for long periods of time/joint pain.”

 

Speak confidently. So many of us feel like we need to apologize for being sick. Remember that you never asked to be sick, and that you don’t need to apologize for something that was never within your control.

 

Understand your value at your work.

Unless you work for a truly crappy company in which you’re not much more than a warm body at a desk, your colleagues value you for what you’re able to accomplish, not the time you put in or whether you’re at your desk the second the clock strikes 9am.

 

What are your unique talents and gifts at your job? Are your ideas smart and original? Are you the one who pays attention to deadlines and details and keeps everyone else on task?

 

What kind of accommodations do you need to feel well enough to be able to maintain these strengths?

 

In all likelihood, your work would rather keep you than lose you. Hiring and training a replacement costs more than keeping an employee. Hopefully, you have built a stellar reputation and your work wouldn’t be the same without you.

 

Have a plan.

 

If your condition is acute, give a timeline for recovery. If you don’t know, promise to give updates.

 

If you are not expected to resume your former level of productivity, give suggestions on modifying your work environment.

 

What specific accommodations do you need in order to be productive? Do you need to start later in the day? Sit for longer? Get up and walk around every hour? Spend less time staring at a screen?

 

Relay these needs to your boss, and offer solutions. Instead of starting at 9am, you would like to start at noon and stay later. You can’t attend meetings after 6pm. You need a light filter installed on your computer, and your workstation has to be away from any fluorescent lights.

 

If I could give only one piece of advice, it would be to remember your value as an employee and to be brave. More likely than not, you are an integral part of your work environment, and your colleagues and boss will want to make the necessary accommodations to keep you comfortable and productive.

A Day in the Life of a Sick Girl

I love a good teacher workshop. Want a full-size poster with six types of learning styles coordinated by the colors of the rainbow? You got it! Bow arm exercises for a five-year-old in Book 1? You’re in luck! Group class ideas for advanced violists? BAM! There it is!

When I’m feeling stuck professionally, a workshop leaves me energized, excited, and bubbling with new ideas. Plus, catching up with colleagues and swapping stories and advice cheers me up as much as the actual instruction.

Naturally, I’ve been looking forward to the Winter Workshop for Suzuki Method string teachers in my area. Clinicians from different cities fly in and run group classes, violin masterclasses, and professional development lectures for teachers at least once a year.

A month earlier, I had filled in the online application, skipping over the sign-up for volunteer positions. Since getting sick, I’ve learned the hard way that almost any commitment is an over-commitment. I never know how I’ll be feeling on any given day, so I try to avoid volunteering altogether. This way, I won’t have to back out at the last minute if I’m too sick to help.

lean out

These days, I practice the fine art of “leaning out.”

When I clicked submit, that annoying error message that pops up when you leave a field blank directed me back to the volunteer section.

Damn it. They’re onto me.

I scrolled past stacking chairs, cleaning up, and setting up, knowing that too much physical exertion is a one-way ticket to the land of Bed for Days.

Stuffing folders. Picking up clinicians from the airport. I’m hoping to feel well enough for one day so I can attend the workshop. Any extra day is pushing it.

Registration. That involves getting up in the morning, doesn’t it?

While I nearly always feel better as the day progresses, nausea, fatigue, and occasionally joint pain like to gather and hang out in my bedroom every morning. Few things short of a house fire can pry me out of bed before 10am.

I’d finally settled on helping tune students. I’ve been tuning instruments for the past twenty years, so this would be hard to screw up. Also, I’d be at the workshop anyway, so this required no extra time or physical effort beyond my ability.

Or so I thought…

A few days before the workshop, the coordinator emailed me to confirm that I would be available at 8am and 3:20pm to tune instruments.

I could explain to the coordinator that I’m sick and my 8am is the equivalent of a regular person’s 4am, but I hate it when people assume I’m asking for sympathy, or, even worse, that I’m intentionally trying to shirk responsibility.

My fingers tapped out a reply.

“Mornings are my nemesis.” No. That won’t do.

“I’m morally opposed to any hour of the day before 11am.” Too dramatic.

“Mornings are against my religion.” Not very believable. Also, difficult to prove.

I finally settled on a simple request to be reassigned to a task later in the day, sans explanation. Fortunately, the coordinator accommodated my request without questioning it.

The morning of the workshop, I woke up tired and achy after a night of disrupted sleep. I rolled out of bed, walked the dogs, swiped some makeup across my face, and rushed out the door to arrive at the workshop just in time for the lunch break. No sweat; I still had half the day to observe and learn.

To my surprise, I caught a glimpse of an acquaintance from Austin sitting across the lunchroom. He’s my age, but a rising star in our field, for good reason. If energy and creativity were magical, he’d rule his own enchanted forest full of rainbows and unicorns.

 

unicorn

“Meghan!” He exclaimed, giving me a hug when he saw me.

“It’s been what, three years? What’s new?”

Oh, you know. Relearning to walk. Getting over some brain inflammation. Leaving my husband and filing for divorce. Same old, same old.

“Not too much. You?” I asked.

“Lots going on!” he grinned. In the years since we’d seen each other, he’d successfully auditioned for the Austin Opera Orchestra, presented at at least one state teachers’ conference, and guest taught at a handful of summer institutes across the country- not to mention running his own institute. Truly, my friend is an amazing teacher and deserves all the success in the world.

Is that wedding ring on his left hand new? Did he get married last year?

“Do you have any students here?” he asked.

Ah, that deadline I missed. I remember that day! I spent it reading up on DIY divorce, printing out papers, and getting my ex to sign them in a public place (because I’d read that was safest). He couldn’t handle me being sick, so I imagined he won’t take to the whole divorce idea too well, either. Then I wandered downtown cluelessly asking random passersby where to file them until I finally was lucky enough to stumble into the correct line in the county courthouse. They’d confiscated my water bottle at the metal detectors at the entrance for being contraband, but at least they didn’t take my shoes…

“Ah, no. But maybe next year.”

“Well, I’m looking forward to teaching them next year, then!”

By now, the other teachers were packing up their lunches and squinting down at their itineraries. He slipped out the door in a crowd of instruments, tote bags, and teachers. I started to follow him when I nearly bumped into another teacher I knew.

“Hey! How’s it going?”

She smiled in response, then coughed.

Uh oh.

“How was Disneyland?” I asked. She and two other teachers had just returned from a tour in which their students had performed.

“Amazing! It truly is the most magical place on Earth,” she croaked.

What dosage of immunosuppressant am I on this month?

“Exhausting, though,” she continued.

I nodded, mentally filing ‘Take Students to Disneyland’ under Things I’m Probably Not Able to Handle.

“I’ve been sick since we got back. My doctor says it’s a retrovirus, which is an old virus that comes back when your immune system is down.”

Crap.

“Hey, can I borrow your schedule printout?” she asked suddenly.

 

biohazard

Red alert!! Red alert!!

 

“Sure!” I said brightly, handing it to her by the very tips of my fingers.

She flipped through it, pausing to give directions to a colleague who asked for help.

“Here you go.” She reached to hand it back.

“That’s ok!” I said, keeping my hands by my side and hopping back a little. “I don’t need it anymore.”

“Here..” she tried to hand it to me again.

She looked bewildered as I slipped awkwardly out the door.

Once back home, I opened my computer and noticed an email from some website called urbandictionary.com. They asked to use my picture for something called a “hot mess”- whatever that is. I guess I’ll get back to them when life is less crazy…

Ultimately, I enjoyed the teacher workshop and came home swimming in ideas, just as I had hoped. Any day that’s only minimally affected by lupus rather than fully hijacked can’t be a bad day.

Crisis of the Week

I woke up Saturday around noon feeling like I’d been hit by a truck. Most of us sickies know the feeling: sore muscles even if you didn’t work out, fatigue pushing you back into the mattress, dull pain slicing through the fogginess in your head.

 

Oh. It’s one of those days.

 

Luckily, Saturday is my day off, reserved for relaxing, taking the babies to the dog park, and cooking and cleaning I didn’t get to during the week. No swiping eyeshadow onto droopy eyes, stuffing my purse with cans of espresso, and dragging myself to work when I can barely walk straight.

 

During my first two years with lupus, every day brought some new symptom ranging from the merely annoying to the outright terrifying. I never knew if I would throw up my oatmeal or make it to school with something in my stomach. Would the brain fog and confusion result in me losing my keys five times in one hour or getting lost on the mile drive to school? Fatigue and nausea lingered like obnoxious houseguests for the first two years, returning to visit for days or weeks ever since. I remember waking up one morning with with arms so weak I couldn’t hold them over my head, then staring blankly at the coffee machine because I couldn’t lift a cup of water to fill it. I would stumble into class with hair that looked like a nest for small woodland creatures because I couldn’t lift my hairbrush.

 

As I adapted to having an illness and started to listen to my body, the number of crises dwindled to once or twice a week. I learned to increase or decrease my dose of steroids without having to call my doctor every five minutes. Light weight lifting with a trainer strengthened my arm muscles so that intermittent attacks of muscle weakness barely affected me. Allowing my body to rest, even if it meant I spent half the day sleeping, broke the fatigue’s hold over me.

 

But even with all the precautions, medication adjustments, and resting, crises still happen. Even during the best of times, I still wake up exhausted some days and don’t know why. I still feel dizzy or am sensitive to lights and sounds for no reason. Even when life seems sunny, fatigue still lingers like a shadow.

 

I spent years hoping for the day when living with lupus would no longer be a struggle. Several months ago, I was driving home from work on one of those perfect days when the sun shines but doesn’t burn and the spring breeze carries the faintest echo of winter chill. My thoughts danced from one subject to another, free of the cloud of exhaustion. After a period of severe illness when nothing seems to go right, you celebrate the days when you feel well, the sun warms your shoulders like a cozy sweater, and your hair has finally decided not to stick up like a haystack.

 

I wondered if tomorrow would be as idyllic as today- then suddenly realized I couldn’t possibly predict that. Like the weather, lupus conditions are temperamental and always changing.

 

Over time, I’ve learned not to be fazed by extreme weather conditions. As a kid growing up in Houston, I didn’t have a choice. Tornado warning? Sure, I’ll wait twenty minutes before walking the dog. 40 degrees today and in the high 80’s tomorrow? Like they say: If you don’t like the weather in Texas, wait around a day or two. And who can forget our biannual week off from school/mandatory evacuation courtesy of hurricane season?

 

What if I thought of my disease the way I think of the weather? There will always be floods, tornadoes, mosquitos, droughts, and heatwaves hot enough to fry an egg on the sidewalk. To expect cool breezes and sunshine every day isn’t realistic. The best I can do is take the good with the bad.

 

Appreciate the perfect Fall day while it’s here. Rest inside with a good book during the storms.

Things That Terrify Me Less Than Losing My Health Insurance

  1. An asteroid hurtling towards Earth. (At least we’re all in this together.)

 

  1. Roaches. Lots of roaches. (Gross, but not fatal.)

 

  1. Being stuck in a room in the Amityville Horror House for a week.

 

  1. Being struck by lightning. (Much, much less likely to happen.)

 

  1. Being vaporized by an atomic bomb. (Quick and painless compared to a long, drawn out battle with brain inflammation.)

 

  1. Zombies. (They’ll eat your brain, but at least they’ll do it quickly- unlike lupus, which devours your brain slowly over many months).

 

  1. Getting into a car accident. (It’s not the car insurance companies that are turning me away because of my preexisting condition.)

 

  1. A pack of rabid wolves. (You can’t climb a tree to get away from lupus).

 

  1. A swarm of eight million mosquitos. (One of my lupus medications doubles as an antimalarial.)

 

  1. Tax season when you’re self-employed.

 

Thoughts I Had While Shopping Recently

Junior…Plus…Women…Maternity. Where’s the I-Was-Once-Normal-But-Then-I-Took-Steroids section?

 

In the history of the world, has screaming at your child to “stop crying” ever actually resulted in stopping them from crying? Leave insights in the comments below, although I think I already know the answer to this one.

 

Is there a name for fear of accidentally buying a dress from the Juniors section when you’re in your thirties? Clingingtoyouthaphobia? I’m not alone in this, am I?

 

Ross and Marshall’s- genius layout! With accent chairs and footstools right next to the women’s section, I can sit down with a stack of dresses when I get fatigued. Everyone will think I’m just testing out the chair.

 

A Starbucks right in the middle of the store is the only thing that’s missing from DSW. Barnes and Noble knows what’s up.

 

This dress clings in all the wrong places. This one fits like a tent. THIS. ONE. IS. PERFECT! Finally! What label is it? Ivanka Tru…ugh…

When Empathy Isn’t Helpful

Lately on Facebook, memes and quotes about empathy seem to be popping up like mushrooms after the rain. When we’re not reading about how empaths read your body language, not your words, we’re seeing memes of Empathy Cat walking in your shoes.

 empathy-cat

No, really.

Don’t get me wrong- empathy is an emotion I hold in high regard. If any one social skill is capable of swooping in with a cape and saving society from the bigotry, hate, and senseless fighting that seems to have overtaken us these days, empathy is it. No wrong can ever come of listening to another human and using your own experiences to relate to theirs.

As someone who is very sensitive to the emotions and needs of others, I’m glad to see empathy finally having its moment. We humans fall too easily into judging others. Feeling superior to our colleague who never manages to turn in his reports on time or the mother in the grocery store with six kids and food stamps can seem to validate our life choices. It feels good in the moment. We can pat ourselves on the back feeling like we’re ahead in life -like we’re smarter, stronger, better. The reality of the situation is that if our circumstances were different, we might be the one on the corner holding a cardboard sign.

Society’s recent push for empathy appeals to our better angels. When we choose to tap into the part of us that identifies and understands another’s situation, feelings, and motives, we connect to others in a way that actually does make us stronger, wiser, better humans.

At no point will I ever do anything but whole-heartedly applaud society’s recent embrace of empathy.

But…

Since getting sick, there have been times in my life when empathy has not been the appropriate response to what I’m going through.

I first began to notice empathy’s failure in addressing my experience living with a chronic illness during my first year of grad school. My classmates were practicing, studying, and partying. I spent my time juggling doctor’s appointments, wondering why my hair was falling out, and vomiting. When I tried to confide in my friends about the constant exhaustion, I often received this sort of response:

“Yeah, I’m really tired too.”

“I know. Grad school is tough.”

“I wish I could stay in bed all day too.”

In normal situations, empathy is a bridge that connects two people. By digging through our emotional memory and recalling how it felt to be feeling how your friend is now, we can relate to others. We’ve all felt sadness, frustration, annoyance, or anger. We’ve all been tired.

But what happens when your experiences and feelings fall outside the realm of what is considered to be normal? What if you don’t even know anyone who has felt the way you do now?

Unless you’ve been sick yourself, you can’t really nod in agreement when I talk about how physically painful it is to drag myself out of bed every day. You may have once collapsed in exhaustion on your doorstep when you were sick with the flu or a virus, but collapsing every single day for months on end (and knowing that tomorrow isn’t going to be any better) is a different experience entirely.

Most people simply haven’t had this experience. They can’t relate, and when they try to, it has the opposite effect of what they intended.

It’s isolating.

Especially when you are new to living with a chronic illness and are experiencing skepticism by doctors and acquaintances for the first time, failed attempts at connection remind you how alone you are in the Kingdom of the Sick.

So what’s a well person to do when your friend or family member talks about their life with illness?

Don’t nod your head. Don’t pretend you know what they’re talking about. Don’t gloss over the discomfort with “tomorrow’s another day” and “we all have issues.” Ask questions. Listen. Try to understand, even if it’s scary or weird or outside your comfort zone.

Sick people don’t talk about their illnesses to make regular people uncomfortable. We don’t talk about being sick to elicit sympathy or because it’s fun (it’s not). We talk because connecting and explaining our experiences to others eases our burden and reminds us that we’re still human.

Welcome to My Life

My house could pass as a shelter for wayward footwear. In the shoe rack by my front door sit shiny coral heels, blue and white striped peep toes, leather boots with metal hardware, black ballet flats, red pumps- many of them scuffed because I hate to throw out any shoe that has carried me someplace interesting.

 

Like most American women in their twenties, I am an enthusiastic participant in a culture that encourages me to drape myself in textiles, stick shiny ornaments into holes in my ears, and swipe various pigments across my face before heading out into the world. As much as we like to believe otherwise, we are a culture that judges based on appearance, and it’s unlikely that will ever change.

 

Many of the assumptions people make after glancing at me are correct. I’m college educated and middle class. My smile radiates that special mix of gentleness and don’t-you-dare-throw-a-tantrum-ness that pegs me as a teacher. I think yoga is a good workout. My love for Starbucks is pure and true and will no doubt last for all eternity.

 

But the one thing nobody ever guesses after meeting me is the one thing that has the most control over my life, which is that I’m sick. Not sick as in “I caught the flu and I’ll be in bed binge watching Game of Thrones surrounded by tissues,” but actual disease sick. For the past eight years, I’ve lived with lupus, a chronic illness.

 

Lupus is an autoimmune disease. Visualize the cells that make up your immune system as a well trained army ready to attack foreign germs and bacteria. Now imagine that that army is confused, undisciplined, possibly even hungover after a crazy night out that they don’t completely remember. Your confused immune system beats up on your kidneys, your joints, your nervous system, all the while letting dangerous germs slip past. That’s lupus.

 

Lupus is a little different for everyone. For me, living with a lupus means that I’m frequently exhausted, often on a daily basis. Twice, my disease has gotten out of control with life-threatening consequences.

 

This blog is about my everyday life with an invisible illness. It’s about the disorientation of looking one way but feeling another. It’s about not being who everyone assumes you are. It’s about having challenges in your life but choosing to live and love anyway.

 

Don’t know what it’s like living with a hidden illness? Take a walk in my shoes.