Inside a Lupus Support Group

One of the best and most fun decisions I ever made was to join a support group for people with lupus.

support group

 

At the time, I had just moved back to the state where I grew up after graduating from school. I knew people in the area, but didn’t yet have a lot of friends my age or anyone I felt comfortable telling about my disease.

 

I’d always thought of support groups as a bunch of really emotional people sitting around crying about their problems. Did they really all hold hands and sing kum-bai-yah like in the movies? I needed to talk to someone who could relate to what I was going through, but I wasn’t sure a support group was for me.

 

kumbayah

I don’t even know the words to kum-bai-yah.

 

A quick Google search led me to the Lupus Foundation of America’s Houston chapter. The support group coordinator, Linda, sounded fairly down-to-earth over the phone.

 

“We meet once every two months. It’s hard to get people together more than that,” she’d told me.

 

We chatted a bit before I got off the phone about our symptoms and serious flares we’ve had. Linda had survived a neurological flare like me and had had some issues with her kidneys. Her straight-forward manner and unemotional recounting of the facts of her illness put me at ease. She spoke about her disease in the same way I spoke about mine.

 

“We’re not complainers here,” she would laugh over a glass of wine when I met her in person.

 

The first meeting I attended was the annual Christmas party. I dragged my husband along with me to a trendy Italian restaurant with exposed brick walls and candles flickering on each table. I greeted the four ladies sitting around a bread basket. I was the youngest by about fifteen years. An angry red surgical scar snaked up the arm of the woman across from me, but everyone else looked normal- just like me.

 

We chatted and laughed. We exchanged the ten dollar gifts we had brought and someone accidentally lit some red and green tissue paper on fire.

 

CakeFire

 

As it turns out, a support group with pyrotechnics was exactly what I was looking for.

 

I returned to support group nearly every meeting after that. To my relief, nobody ever cried. No one wallowed in self pity.

 

Nobody even holds hands, because we all have arthritis and are afraid of germs.

 

I’m not sure why I was so surprised that all the other women with lupus were… well… just like me.

 

At each meeting, Linda passes out an itinerary listing Lupus Foundation events and symptoms to watch out for. We focused on kidney disease one meeting, then neurological issues the next. She arranged for a holistic health practitioner to come in and talk to us about inflammatory foods. Two meetings later, a rheumatologist came to teach us about autoimmune diseases and answered our questions.

 

Nobody whines, but we do spend time talking about our symptoms and their impact on our lives. When I had issues with insomnia, joint pain, or explaining my disease to family members, the other ladies had answers. I learned the name of the best over the counter sleep aid. They gave me advice on which vitamins to take.

 

Over time, I slowly stumbled onto the true definition of a support group: A group of smart ladies who have been down the road you’re traveling and can tell you where the potholes are.

 

A woman who was just diagnosed recently joined our support group a few months ago. Although she’s older than me and has kids, she reminds me of myself when I was first got sick. She’s tough and tries to push past the fatigue and pain to continue working. She doesn’t want to complain, but she needs someone to talk to. She’s not a whiner. She lives near me and has trouble seeing at night, so I pick her up and we stop at Starbucks on the way on the way to meetings. Chatting with her about symptoms and life in general makes the long drive fly by. When we don’t finish our conversation by the time we get home, we go out to dinner later that week.

 

Being newly diagnosed can be isolating and scary, and she has lots of questions. It feels really good to sometimes be able to answer them.

 

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How To Change the World When You Don’t Have the Energy to Clean Your Own House AKA How I Ended Up With a Three-Legged Dog

Let’s face it: it can be to hard to keep up with your 5k running, Tiki-torch-Nazi-fighting, volunteering, organic composting friends. You’d love to march, but doesn’t that usually involve standing for long periods of time, being out in the hot sun, and doing other healthy-people things? Gardening sounds cool- it’s sustainable, you know there’s no harsh chemicals in your cucumbers, and it would be great to rely less on supermarket chains. But your knees and hands aren’t up for getting out of bed, let alone pulling weeds in the backyard. Also, don’t you have to remember to water them occasionally?

 

piggyback

I’d totally do a 5k for charity if only someone would carry me on their back.

 

When being sick takes up most of your time and energy, but you care about social issues and preserving the environment, you have to get creative about contributing to a cause that speaks to your heart. Here are some little things you can do that don’t require much time or energy while still making a big impact.

 

Donate Money

Assuming, of course, you have money. Personally, I don’t. But if you do, here is a great site that will connect you with some reputable charities that will gladly take it:

 

Purses for the Homeless

Step 1: Pull a couple of old purses out of your closet. Or new ones, like that ugly thing your great aunt sent you for Christmas two years ago that still has the tags on.

 

Step 2: Fill the purses with tampons, pads, granola bars, water bottles, Tylenol, band-aids, soap, and hand sanitizer- anything a homeless woman might need. You can get most of this stuff at the grocery store or the dollar store.

 

Step 3: Keep the purses in your car. If you see a homeless woman when you’re out and about, roll down the window and pass her a purse.

 

Variation: You can do the same thing with plastic grocery store bags.

 

Amazon smile

We all love amazon.com. It’s your favorite place to buy nose-hair trimmers, pregnancy tests, and anti-fungal cream.

 

embarrassed-bear

Hey, no one’s judging.

 

Just select a charitable organization at smile.amazon.com and then continue to buy all the wart remover, prescription strength deodorant, and copies of Fifty Shades of Grey you normally would. Amazon will donate a portion of your purchase to the organization you chose. Mine goes towards homeless puppies and kitties.

Donate Clothes

Schoola is by far my favorite place to send gently worn clothes. Malala Yousafzai, a woman so badass a bullet to the head only made her tougher, founded this charity to raise money for girls’ education.

Gather some used but still fabulous clothes, then print a label from the website here.

Fill a box with clothes that are in good condition, slap on the label, and bring it to the post office.  

malala

I always imagine Malala herself opening my box and being impressed by my impeccable fashion sense and generous spirit.

 

The clothes are sold online at schoola.com. Schoola donates the proceeds to needy schools.

 

Use biodegradable plates.

I’ll let you in on a little secret: When I’m not feeling well, I use paper plates instead of real ones. Even during the best of times, my motivation to wash dishes is decidedly below average.

 

Don’t worry, though. I use the type of plates that will sprout into a beautiful flower in the middle of a landfill someday (or however that works). Sheesh. I’m not a complete heathen.

 

Recycle.

You’ve been hearing about this one since the third grade, so I’m not telling you anything you don’t already know.

 

However, if you’re like me and live in a city without recycling pick-up or live on the second floor and aren’t up for carrying boxes, let your boxes pile up in the pantry. Then guilt your friend who works out into taking them to the bin the next time he’s over.

 

Call your senator or elected official.

Washington, D.C. isn’t Narnia. What’s decided there can affect your immigration status, your income, and your health insurance. Our elected officials are obligated to legislate with our best interests in mind, but they’ll never know what we need if we don’t tell them.

 

Think you’re too sick to talk? Just remember: when you’re deliriously out-of-touch with reality because of a fever or brain inflammation, your call will be that much more memorable!

 

In all seriousness, though: You might not have energy. You might not have money, a job, or your health. But you do have a voice. Use it.

voices

 

Adopt a shelter dog, but choose a really lazy one who just wants to cuddle in bed all day.

You may think I’m joking about this one. I’m not. Three years ago during an especially rough fatigue flare, I glanced down at my phone and saw an email from Houston Poodle Rescue, where I had adopted my first dog. Too exhausted to do anything else, I scrolled through pictures of dogs that had been at the shelter waiting for their “forever homes” for two months or more.

 

One of the dogs had a stump where his front paw had once been. He stared bleary-eyed into the camera. Everything about him looked just a little sleepy. He didn’t strike me as the type of dog who liked to go running and play fetch.

 

Maybe I’d finally found a dog who could keep up with me.

 

I showed up at the shelter a few days later.

 

“I’m just here to look,” I told the lady behind the front desk.

 

“Sure you are,” she’d nodded knowingly.

 

As soon as I picked Wilbur up, he wrapped his little front legs around my neck and gave me a doggie hug. He continued to hug me for the full hour I stayed at the shelter. When it was time to leave, I just couldn’t seem to put him down. Luckily, neither my husband at the time nor our other dog objected when I waltzed in the front door carrying a dog.

 

Technically, it was only ¾ of a dog.

 

Three years later, Wilbur still hugs me everyday. We have many common interests, including lying in bed all day, sitting on the couch, sleeping, and snuggling. The three-legged dog turned out to be the perfect dog for me.

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.