When a Cashier Told Me I 'Look Really Good' for Having Lyme Disease

89
89

“Wh-what are you doing with all…”

Her eyes are wide with confusion and awe. As soon as the words escape, I see her regret. She doesn’t even finish the question, but her reproof is out, suspended between us.

My shopping cart overflows with an item most people purchase in singles, and I am buying in bulk.

One hundred and sixty-seven, to be exact.

I have a hunch that Sam’s Club employees are suppose to refrain from commenting on customers’ purchases. It makes for awkward situations otherwise. After all, if I hoist a candlestick, some rope and set of kitchen knives up on the counter, I don’t exactly want the cashier to yell “Colonel Mustard with the lead pipe in the library!” as she scans my items.

But this time, I’m not offended. In fact, I’m a little surprised to find myself excited to hear the question. I don’t have this opportunity often.

“I have Lyme disease, and I’m speaking to high school students about the illness and how to prevent it. I’m going to invite them to take the Lyme Challenge.”

I expect her to make some offhand comment about thinking I was prepping for one heck of a party. Instead, she nods knowingly, and I am immediately skeptical of her knowledge of the subject. I thought I knew about Lyme disease, too, until I actually got it. But she surprises me again.

“You look really good for someone with Lyme’s.”

Someone with Lyme’s. Seriously?!

Pet Peeve #1: Lyme’s Disease. It’s Lyme. Just Lyme, not Lyme’s. Lyme doesn’t own the disease, so there is no apostrophe. Yeah, I’m still an English teacher at heart. Lyme is the name of the town in Connecticut that first recognized the tick-borne disease. But I forgive the cashier for this oversight because most people legitimately don’t know this, and I’d stopped trying to correct the mistake.

Pet Peeve #2: The qualifier. A compliment that is extended based only on the presence of some identifier.

As in, “You look great… for someone running late.” Or, “You look really good… for your age!”

This irritated me well before my sickness.

The worst one? “You look great… for someone with four kids.” As if somehow the birth of each one gave me permission to add inches or gain a few wrinkles.

I want to look great. Period. Don’t we all?

But I look good for someone with Lyme? This woman clearly hadn’t seen me four months ago when I couldn’t have walked from the car into the store without collapsing. When I’d gained 35 pounds from the medication I was taking every day. When the violet moon-shaped darkness under my eyes was all I could see in the mirror.

Today, I had driven there by myself, walked into and through the store by myself, and was now checking out by myself. Seeing the pattern? By my standards, I was having an abso-freaking-lutely stellar day. Darn it.

Still, in her stinging qualifier, I heard more than just the words. To add that association meant she had seen Lyme disease in someone else.

She went on to share that her neighbor has had Lyme disease for years. She rarely sees her, but when she does, her neighbor is using a cane. In that moment, in her eyes, I did look good. Comparatively speaking.

I swipe my debit card, chatting with her for a minute or so. Perhaps this is another reason why cashiers are discouraged from interrogating customers. Other customers are already placing their items on the counter before conversations of any depth can be finished.

I push the wobbly cart toward my car, inwardly grateful to have it to lean on. Better this cart than my cane.

One hundred and sixty-seven.

Had that ridiculous number of limes not been the sole content of my cart, she never would have known I am sick.

Invisible illnesses are devious. We can mask them with layered clothing, some makeup and a shopping cart to lean on. We want to hide our pain. We want to look good.

But at the same time, we want people to understand our pain. We want to feel like we aren’t alone. Most of our symptoms are unseen. Joint pain, muscle aches, fatigue, shortness of breath and headaches, even when excruciating, are indiscernible by those who look at us. Lyme disease, fibromyalgia, multiple sclerosis, chronic fatigue syndrome, rheumatoid arthritis, autoimmune disorders, blood disorders, and so many more — veiled illnesses that can torment us. In one breath, we yearn for the world to understand this, but in the next, we might just want to look like we feel fine.

We want to wear the right clothes, fix our hair just so and say just the right things. We want to be like all the other shoppers in Sam’s Club, our internal pain and illness disguised by our external appearance.

I load the dozen bags of limes into my car.

One for each day I have been sick.

One hundred and sixty-seven days since I’d felt like a “normal,” everyday shopper.

I want to feel like everyone else, too, but I’ll settle for just looking like it.

Jena’s shopping cart full of limes

Follow this journey on A Broken Crayon.

The Mighty is asking its readers the following: Describe a time you saw your disability, disease or mental illness through the eyes of someone else. If you’d like to participate, please send a blog post to [email protected]. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

89
89
TOPICS
JOIN THE CONVERSATION

When You Hear Crickets After Announcing Your Chronic Illness Diagnosis

2k
2k

A couple of months ago, a Facebook friend of mine announced that she had breast cancer. I was saddened and shocked to learn about her diagnosis, but also heartened by the positive attitude she took. She explained in her post that since her diagnosis, the outpouring of support was so great that she learned “how deeply and widely [she was] loved.”

Moments after reading her words, it hit me why I was feeling so lost and alone. We were both sick, but her illness brought an outpouring of love and support, whereas mine did not. Two weeks prior to this woman’s post, I had shared my diagnosis privately with friends and family and publicly with my Facebook friends. But unlike her, I barely heard a peep from those around me. I made my big announcement and heard crickets chirping. To me, it was akin to a collective communal yawn or shrug.

I wasn’t diagnosed with cancer or AIDS or any of the illnesses people might know more about. Instead, after two years of steadfastly pursuing a diagnosis, I finally received positive test results for both Lyme disease and babesiosis (a rare, severe, sometimes fatal tick-borne disease caused by a microscopic parasite that infects the red blood cells).

Still, not cancer. Not AIDS. I understand to the rest of the world Lyme might not seem that scary, mostly because it probably isn’t going to kill me in the near future (although I am learning it could), or because we just don’t know enough about it to be truly scared. I also understand that most people can’t wrap their heads around Lyme or the even rarer babesiosis because they don’t have any experience with it, and much of what they might hear is that Lyme is hard to get and easy to cure. No big whoop.

Lizbeth Finn-Arnold
Lizbeth

And yet, I think (because I’ve talked at length about my struggles) that people in my inner and outer circles should be somewhat aware that Lyme has actually been a pretty big whoop in my life. For two years, I’d written and talked about my fight to get a proper diagnosis for a mystery ailment that was decimating my life, turning me from a once healthy, productive, inspired woman into a depleted, empty shell. I talked about the excruciating and constant pain that kept me from sleep, exercise, work, writing and basic functioning. I think I made it fairly clear that I was at the mercy of an insidious illness that brought me into the darkest pits of hell and had me at times asking, “What’s the point of living this way?”

Therefore, when I didn’t receive support or even simple acknowledgment from more than a couple of people, I made the assumption that not only did people not care about my disease or my suffering, but that I was deeply and widely unloved.

What other assumption could I make? If an outpouring of support equals love, then the reverse would mean no love.

I know this may seem like an irrational assumption. But isn’t it also irrational to think that people can only show empathy and compassion for the suffering of others if it’s tied up in a neat diagnosis they can comprehend?

Which brings us to the bigger question: Why do we need comfort and support from others?

We are, after all, social animals. We crave connection. Validation. Acceptance. Love. And the truth is, when you feel support and loving energy from your community, it has a very powerful, healing effect. And it’s simply nice to know people care and are thinking about you, especially on bad days when you are running on fumes and need good thoughts to keep you in the fight.

Those of us living with Lyme (and other invisible chronic illnesses) often don’t feel supported and comforted when we need it most. Instead, much like our illnesses, we can feel ignored, misunderstood, misdiagnosed and maligned. We don’t have community support. We don’t have government support. We don’t have the medical establishment’s support. We don’t have the media’s support. Sometimes we don’t even get all that much support from our family and friends.

Lyme is a lonely battle.

So, if you get the chance, send some love and support to someone who might greatly appreciate hearing from you. And remember, people with Lyme are no different than anybody else. Everybody wants to be seen, heard, understood and loved. Deeply and widely.

pills and treatments on table
Lizbeth’s treatments for Lyme disease.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

2k
2k
JOIN THE CONVERSATION

I Was Low on ‘Spoons’ During the Blizzard, So My Neighbors Did This

308
308

I live in Northern Virginia in one of the areas Winter Storm Jonas hit hardest. My town’s recorded snowfall was 36 inches, but with the snow drifts it was even more.

We were lucky we didn’t experience a power outage in the freezing temperatures and that our house was stocked with food. My husband is a registered nurse, and we were fortunate he was off during the storm because the wonderful emergency and health workers out there have to go to work in any weather condition.

A day after the storm ended, he cleared our front steps and part of our driveway, but the large amount of snow required many breaks. During one of his, a neighbor who we don’t know proceeded to use his snowblower to clear our entire sidewalk, as well as the sidewalks of many of our neighbors. He did this out of the goodness of his heart. It was a pure act of kindness, and we were all blessed to witness it.

The next day I was so relieved to see they finally plowed our street. Two of my biggest concerns during the storm were what would we do if the power went out, and what would we do if we had an emergency that required an ambulance or a trip to the ER?

These thoughts terrified me and multiplied with each inch of fresh fallen snow. My son has life-threatening food allergies, and I’ve had to call an ambulance for him recently due to severe croup. I have chronic lyme disease, asthma and other chronic conditions, and am often sick or requiring an ER visit. Plus, an accident can happen to anyone, even while at home, and the roads were impassable.

The first day we were barely able to get out the front door, so when that snow was gone, I felt a little less anxious. The plows had a difficult time clearing the snow and worked on our street for what seemed like hours. When they were through, a huge pile of heavy snow remained blocking my driveway.

My husband was at work, and I had very few “spoons” left (people with chronic illness use this phrase to describe how much energy we have), but I knew for our safety, I had to clear the area. My 10-year-old daughter offered to help but was unable to do it for more than a few minutes. It was hard work removing snow from a huge area of what was now over 4 feet post-plow.

It was a beautiful, sunny day, but I wasn’t feeling very sunny inside. I was tired, nauseous from my daily antibiotic, and wishing my husband was home.

Then like a ray of sunshine, two of the young high school/college age girls from two houses down came over and said they were going to help me. I couldn’t believe it; it was incredibly kind of them. When I was their age, I was nice but in a complacent sort of way. I was wrapped up in my own world and problems, and I don’t think I ever went out of my way to help a neighbor shovel. I was impressed with these girls and glad my kids saw them helping me.

girls helping shovel snow

After a few minutes of shoveling and chatting, another neighbor came over with the kind gentleman’s snowblower (which cleared our sidewalk the day before). This was a great sight to see, and our mound of snow would be cleared in no time! He removed all of the remaining snow quickly, efficiently and benevolently.

neighbor plowing with snowblower

The street was filled with neighbors helping neighbors and was as it should be. They all helped each other clear their driveways and rescue their buried cars. This lasted for hours and continued after I went inside to rest.

neighbors helping plow

I’m incredibly grateful to all of them and appreciate their kindness. They didn’t have to help me, but they wanted to. They represent the good in this world. They’re an example of the kind of positive stories/acts that should continue to go viral, to drown out the negative ones.

I will never forget the Blizzard of 2016, and I will never forget what my neighbors taught me:

  • When you don’t have many spoons left, there’s always someone to lend a helping hand.
  • We’re surrounded by good people; we just have to take the time to realize it.
  • If you have a snowblower, shovel or a smile, you can make help make someone’s day.
  • We should all be considerate and try to help our neighbors more.
  • For every unkind person, there are many more kind people to make up for it.
  • If you are the recipient of an act of kindness, point it out to your kids. Then maybe they will realize its value and strive to give back someday.
  • Heroes are all around us and are born from everyday acts of grace.

All of us face many storms or difficulties in our lives, some more than others. But if we learn to open our eyes and see the acts of kindness born from such storms, we can help each other get through.

We can help this world become a much warmer, brighter place. We can help each other melt any hearts that may have become icy or burdened by piles of snow.

mom and her children outside in the snow

Follow this journey on Poetologie.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out ourSubmit a Story page for more about our submission guidelines.

308
308
JOIN THE CONVERSATION

TV Star Shows Reality of Chronic Illness With a 'Bad Selfie'

1k
1k

On Sunday, “Real Housewives of Beverly Hills” star Yolanda Foster posted a photo on her Instagram account offering support to anyone living with a chronic illness.

Foster, who has chronic Lyme disease, snapped the selfie in bed with the caption, “Just because some ppl are done with your journey, doesn’t mean your journey is done… #AnotherWastedSaturday #LifeFromTheSideLines #Spoonie #LymeDiseaseAwereness #DeterminedToFindACure #AffordableForAll PS: Bad Selfie Day

Foster was diagnosed with Lyme disease in 2012 and has been vocal about sharing the ups and downs of her daily life on television, as well as her blog and social media.

She’s also faced backlash from co-stars who question her struggles with the disease and her frequent social media posts about it. Over the course of this season, we’ve had a few Mighty contributors share their thoughts on the matter, urging the public to be more sensitive to those living with invisible illnesses.

“Lyme disease can be incredibly debilitating, bringing with it intense pain, crushing fatigue, cognitive impairment and many other difficult symptoms,” Dorothy Leland, Vice-president of LymeDisease.org told The Mighty. “People may be stuck at home—possibly bedbound — cut off from any kind of support system. Since even well-meaning friends and family members probably don’t understand what’s going on, a Lyme patient’s sense of emotional isolation can be brutal.”

“Thus, when famous people like Yolanda Foster, Avril Lavigne and Debbie Gibson share with the public that they are also grappling with Lyme disease, it can bring hope and a sense of validation to people who sorely need it,” Leland added.

Around 300,000 people are diagnosed with Lyme disease every year in the United States, according to the Centers for Disease Control and Prevention. The bacterial infection is primarily transmitted by ticks, and it’s difficult to diagnose due to the fact that its symptoms mimic many other diseases, according to LymeDisease.org.

For more information and support networks, visit LymeDisease.org’s website and Facebook page.

1k
1k
TOPICS
JOIN THE CONVERSATION

To the People Who Hold My Hand Through the Hardest Times

904
904

The passing of David Bowie, my friend’s young husband (he died at 54 years old from ALS brought on by Lyme disease), and my father-in-law have really been weighing heavily on me. I am 46 years old now, battling Lyme disease and five other chronic conditions, and I feel like it’s the end of an era.

I am no longer in my 20s or 30s, and life is passing by quickly. It seems the older I get, the faster the time flies.

I constantly read about the untimely death of so many, due to illness, violence or accidents.

We never know when our time will come.

We shouldn’t spend our days contemplating this, however, we should spend our days being thankful and giving thanks. Planning for the future but living in the moment. Enjoying and spending time with our loved ones. Helping others.

In case I have fewer moments left than expected, I wanted to write this letter. Please feel free to share it if you like it or if you can relate to it.

To All Those Who Have Ever Been Kind to Me:

I have lived many years. I have seen many things. But what I remember the most are the encounters with those who have been kind to me.

Some were friends, some were family, many were complete strangers. You gave me a sweet smile, a pat on the back and you opened many doors for me.

You helped me grow, you helped me relocate, you helped me move on. When I was down, you helped pick me up. When I was happy, you shared my joy.

You served me many meals, you sold me many items that I needed to survive, you drove me where I needed to go. You helped me when I dropped my groceries, you helped me when I dropped the ball, you carried my luggage to the airport. You provided my medicine, you provided me with shelter on a cold night, you provided me with companionship.

You taught me literature, you taught me how to sew, you taught me how to live.

You paid the bill when I was low on cash, you held my hand through the hardest times, you never let go.

You walk by me every day, you see me at family gatherings, you are a pleasant memory.

I am thankful for every single one of you who were kind to me and who showed me how to be kind. I am glad I met you.

I am forever grateful, and I will never forget you in this life or the next.

I will take you with me wherever I go.

For you are in my heart, my soul and my mind.

I hope you have a blessed life. I hope you live a life filled with love and happiness.

For you brought happiness into my life, you deserve my eternal gratitude and the best that life has to offer.

You are my poetry.

Thank you for showing me how beautiful life is, and for providing me with the subject for all of my poems.

Love,

Kathy

A photo of Kathy taken on her honeymoon in Lake George, New York. She is sitting next to the water and looking at the landscape.
A photo of Kathy taken on her honeymoon in Lake George, New York. She is sitting next to the water and looking at the landscape.
904
904
TOPICS
JOIN THE CONVERSATION

Holidays With an Unwanted House Guest

166
166

I don’t know where all the snot comes from. One minute you’re chugging along, feeling proud you have your Christmas cards addressed, and the next, you’re blowing your nose every 10 minutes, wondering how in the crap your body instantly manufactures so much yellow mucus.

It may be the only process my body does effectively anymore.

And those Christmas cards? They’re still tarrying on the hall bench, waiting to be deposited in the mailbox. I’m too stubborn to ask my husband or teenage driver to swing by the post office.

This is living with a chronic illness. For me, it’s Lyme disease, but there are oodles of auto-immune diseases out there, sometimes making what should be the happiest time of the year the hardest.

The bustle and stress of the holidays creates an open invitation to a flare, a reoccurrence of exaggerated symptoms, from joint pain to extreme fatigue. The worst part is thinking you have this thing under control, only to be sucker-punched by it at the worst possible time.

I guess any time feels like the worst possible time, doesn’t it? If I could schedule a Lyme flare, actually write it in pen on my calendar weeks in advance, it would be considerably be tolerable.

But Lyme is far from tolerant.

Rheumatoid arthritis, fibromyalgia, POTS, you name it. They don’t care that it’s the holidays and we have long to-do lists.

For ten days, I’ve fought the flu, a mean-spirited bug brought home from school and shared by my daughters. They were all better in two days. Me, not so much. Lyme, along with the barrage of medications I’ve consumed in the last year, has weakened my immune system.

Okay, weakened isn’t the right word. Obliterated is more like it.

Still, when I first realized the body aches were a result of the flu and not a relapse, I was relieved. If you have a chronic illness, you’ve probably thought “thank God, it’s the flu” before, too. I begrudgingly canceled my weekend plans and focused on healing.

I rested, but not in bed as instructed by my homeopath. I continued to eat clean and take my supplements. I even started the recommended garlic protocol, a full teaspoon of freshly chopped garlic swallowed daily. The cold was kicking my ass, but on the upside, there wasn’t a chance of vampires coming anywhere near our home.

I didn’t leave the house for four days. Then I did what most chronically-ill people do. I sucked it up. I didn’t want to disappoint my family, so I continued with our planned overnight outing to visit my oldest son. An hour and half away, I could do this.

My daughters and I helped assemble and decorate a Christmas tree, something significantly more important to us than to my college kid about to enter finals week. We made quesadillas together and watched Christmas movies. The next morning, we went out to breakfast, visited the local pet store and watched Pixar’s “The Good Dinosaur.”

(As a side note, anytime the word “good” is used in the title, the movie will be gut-wrenchingly heartbreaking and your 5-year-old will sob, loudly, the entire last thirty minutes.)

It was a sweet little overnight trip. The girls had a blast and their big brother had clearly missed them. Sure, I had pain. The flu was triggering a Lyme flare, creating debilitating pain in my ankles and wrists. A wheeze had developed in my lungs, and my chest and back hurt constantly. I was the kind of tired no nap can fix and in too much discomfort to sleep anyway.

But it was worth it.

I thought.

With chronic illness, what you suck-it-up and do today, you will ultimately pay. The day you make the lapse in judgment you’ll think you’ve gotten away with it, but punishment is inevitable. Five days later, I’m still paying.

I’m now officially resting in bed, a sure sign that I feel miserable. It’s inexplicably difficult to shut yourself away in your bedroom when you have children who need you….

…when it’s the holidays and two of your trees are still naked.

…when there’s Christmas shopping to do because, sick or not, you have to get presents under one of those naked trees.

…when you just want to be part of all the freaking merriment.

…when all you want for Christmas is a day without pain. An hour without Lyme. A minute of just being me.

Yet, those children who make bedrest challenging, also make it doable. They rush to my side as soon as they get home from school, nestling into the warm bed and the crook of my arms. Gracie tells me about how today was “the best day ever” because she made up a game that everyone played during recess. We talk about her classes, which boys like which girls and what she’ll wear to cheerleading practice.

We play Candy Land, then we transform the game into Christmas Land. We stack the deck and invite their brother to play. We laugh. Amid the blankets and pillows, we eat chicken noodle soup and watch cooking shows. We snuggle.

This isn’t the life I’d pictured or the holidays I’d planned, but it’s enough.

And every night I fall sleep with the conviction that tomorrow will be better. Surely, the pain will ebb, breathing will get easier and I’ll be able to walk to our mailbox to send those stinkin’ Christmas cards.

Cuddles and hope.

I remind myself that‘s what this time of year is all about anyway, right?

fullsizerender-3
Playing “Christmas Land”

Follow this journey on A Broken Crayon

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness during the holidays. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

166
166
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

6,300
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.