18 Memes That Nail What It's Like to Live With Chronic Illness

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As many people who live with chronic illness know, laughter is sometimes the best medicine. A sense of humor can be essential to getting up each day and moving forward despite the many challenges that chronic illness may bring with it.

The Mighty teamed up with the AutoimmuneMom Facebook page to ask our readers to share with us some of their favorite memes about chronic illness.

Here’s what you sent us: 

1. 

chronic illness meme: auto-immune disease, because the only thing tough enough to kick my ass is me
Submitted by Melissa Austin

2. 

chronic illness memes: when i'm feeling down and someone says suck it up i get the urge to break their legs and say walk it off
Submitted by Talia Tedrow

3. 

chronic illness meme: oh, what's that you say? i don't look sick? well.. you don't look stupid but...
Submitted by Leanne Wood

4. 

chronic illness meme: oh my cousin's friend's sister's girlfriend used to have that, she had magic healing moon fossils implanted under her skin and now she's fine, you should ask your doctor about that
Submitted by Tabitha Hodges

5. 

chronic illness meme: i am not anxious, i am just extremely well educated about the things that can go catastrophically wrong
Submitted by Katie Smeltzer Ireland

6. 

chronic illness meme: my whole body hurts from not doing anything today
Submitted by Leah Larsen

7. 

chronic illness meme: why are there never any good side effects? just once i'd like to read a medication bottle that says may cause extreme sexiness
Submitted by AutoimmuneMom

8. 

chronic illness meme: being alive is so fucking expensive
Submitted by Leah Larsen

9. 

chronic illness meme: you can't have that condition you're too young! if only it had asked ID
Submitted by Sarah McGee

10. 

chronic illness meme: you've got it backwards actually, i'm faking being well
Submitted by AutoimmuneMom

11. 

chronic illness meme: when i'm trying to keep all my conditions in check
Submitted by Christina Chalgren

12. 

chronic illness mem: pain lets you know you are still alive. man i feel so, so, so alive right now
Submitted by AutoimmuneMom

13. 

chronic illness meme: recovery expectations vs. reality
Submitted by Karin Ursula Phelps Williams

14. 

chronic illness meme: they say always trust your gut. have you met my gut? you don't want to trust that bastard.
Submitted by Jayne Olson

15. 

chronic illness meme: the face you make when your doctor says let's try this new medicine
By Stephanie Nasby

16. 

chronic illness meme: i think your IBD is all in your head. don't make me eat one of my trigger foods and lock you in a room with me.
Submitted by Jayne Olson

17. 

chronic illness meme: i can't diabetes today. don't make me diabetes today...
Submitted by Andrea Steeves-Belanger

18. 

chronic illness meme: i may be chronically ill but i'm also chronically fabulous
Submitted by Jayne Olson

 Check out the Chronic Illness Cat Facebook page for more great memes.

18 Memes That Nail What It's Like to Live With Chronic Illness
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My 4-Word Response to the Mom Blocking the Accessible Bathroom Stall

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Little girl in a wheelchair. I often find myself struggling with how I set the boundaries of my expectations of others with respect to my daughter Ez. What are appropriate expectations to have of caregivers? Of her doctors? Of her school district? Of her family members? Of the children she meets? Of the strangers who see her out in the world? What are their obligations to her? How do I walk the line between recognizing and accounting for (and expecting others to recognize and account for) the things that make life a bit harder for Ez and expecting her to be embraced as “just another kid,” as a peer, as a member of society who isn’t actually more important than anyone else?

These are not easy questions. But these questions are ones I grapple with constantly. I find myself constantly saying to my husband André or my mom or a friend, “Is that OK? Um, no. Right? Or am I overreacting?” I had one such experience on Tuesday that so clearly fell into the “not OK” category that after walking away from it and explaining what happened to André, I was still so aghast that all I could say was, “Well, at least I know what my next blog post will be about!”

Dear reader, let me set the stage:

On Tuesday we took Esmé for a trip through Vermont. We had several things in mind to do, but among them was a visit to the Ben and Jerry’s ice cream factory. I’ve always wanted to go. Ez has been showing some interest in eating ice cream by mouth — and Ezzy eating anything is honestly reason enough to go just about anywhere. So we went. I waited in the crazy long line in the ridiculous heat to order super yummy ice cream, while André pushed Ezzy’s red wheelchair around the whole place, stopping to get tickets for the factory tour inside.

So far so good.

When we settled in a shady spot on the patio, we each offered Ezzy tastes of our ice cream over and over. And over and over she pushed them away, crying pitifully with the little bit of chocolate on her trembling lips. So we shifted gears, quickly devouring our rapidly melting ice cream ourselves and moved inside to gather at the designated tour starting time. We waited for approximately 30 seconds before hearing Ez vocalize in the unmistakeable sound that let us know a trip to the bathroom was in order. André and I looked at each other with that “Uh-oh” expression. I thought about her portable potty… in the back of our car down the hill.

“I’ll take her to the bathroom,” I said, “Hopefully she can use the restroom here. If not, we will have to head to the car.” Ez can use a regular toilet, but it isn’t always easy on her or me. So with a hopeful glance back at André she and I and her wheelchair headed to the bathroom line. Any parent in the world would have recognized the look on my face. With a crying, wiggling kid in my arms, too much stuff hanging off her chair, I tried to navigate a just barely accessible bathroom. A handful of kids stood in line ahead of us. A little girl, perhaps 10 or 11 years old, got in line behind us and her mother was directly behind her. By the time Ez and I made it to the front, Ezzy was panicking in my arms. The next bathroom to open up was a regular stall — in which we absolutely would not fit. So I turned to the little girl behind me and said, “You can go ahead, sweetheart,” then nodded toward the accessible stall next to me, I said, “I need to wait for this one.”

The girl walked along to the stall and stepped in. She immediately backed out with a concerned look on her face, and said, “Mom, come here.” An exchange between the two commenced across the bathroom; turns out the stall wasn’t totally clean. While the conversation was going on, I was relieved to hear a flush come from the accessible stall. I started to shift Ezzy’s weight and her chair around so I could get her frustrated flailing little body into the stall quickly.

The mother behind me had still not gone over to her daughter. She instead responded with, “OK, well, you may just need to go into another stall.” And then as the person vacated the accessible stall, the mother stretched her arm in front of me and waved her daughter in before us: “Here, just go in that one.”

Wait, what?!

I’m going to pause here to discuss this.

Even if she was clueless enough to not see that I was holding a child with a disability and pushing a wheelchair (exactly who this stall was there to serve), and thought instead that Ez was a baby, that was still the only stall with a changing table. It was also the only stall I could fit in. I’d clearly communicated this was what we were waiting for. I’d allowed her to pass in front of me specifically because we needed the accessible stall. Even her daughter seemed to hesitate, looking back at her mom like, “Really, because… um…”

I felt completely invisible, or perhaps it’s fairer to say I felt as if the mother was trying to make us invisible, actively ignoring the needs of others to fill her own needs. I know the look she had, the look of trying to ignore the inconvenience we seemingly pose to the world around us. It’s the partner of the exasperated look she gave me as I tried to maneuver in the small, crowded bathroom. I see it on some drivers’ faces when it takes us a bit longer to walk across the street. Or on some shoppers’ faces when Esmé blocks the way in her gait trainer. I see it when we take up too much space or move too slowly or need a bit of extra attention, when we ask for accommodation. Not every time. Not all the time — but more often than seems right.

And like many things that happen over and over to a person, often the question isn’t so much the single isolated incident of being wronged, or overlooked, or treated as less than, or being made invisible — so much as it is the whole thrust of our reality. It’s the weight of minor infringement after minor infringement — of having to be the one whose job it is to regularly “tell people firmly but nicely not to be a**holes” (as my friend put it earlier this week), because my kid’s needs might otherwise be overlooked in a harsh world. It’s particularly hard for those of us who lack strong voices of our own or whose voices are regularly crowded by the din of “me” and “mine.”

In the end I did not, as the polite self-sacrificing side of me might have liked, shrink back and allow it to happen. I also did not, as the snarky voice in my head did, say, “Of course, I’m so sorry my upset disabled child and I have gotten in the way of you doing whatever you want to do all the time…”

Instead, I turned toward her, my heart racing just a little bit, and said, as I’ve had to say before, “Um, no. Absolutely not.”

Follow this journey on The Cute Syndrome.

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Special Ed Teacher Finds Brilliant Way for Students to Thrive Beyond the Classroom

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Sadie Guthrie is a special education teacher at Lawton Alternative School in San Francisco, and her work has been highlighted in the latest video in SoulPancake’s Class Act series, which profiles inspiring teachers.

Guthrie developed a mobile coffee cart program that helps both her students and the community. In the six-minute video above, we see firsthand how a sweet and simple idea is benefitting everyone it touches.

Guthrie says she looks beyond a typical curriculum and tries to imagine where her students are headed long term. She also observed the challenges her students faced when it came to interacting with others in the community, so she came up with a plan. She launched a mobile coffee cart so everyone could learn essential skills — and get to know a little bit more about one another.

Guthrie says everyone was a bit hesitant initially, but the coffee cart program quickly took off. From communicating with employees at the local bakery that supplies the coffee cart’s pastries to taking public transportation, Guthrie’s kids get a chance to practice all sorts of important skills.

“Any school in this country could take this example to help transform their own school community, to make sure that every child feels accepted, that every child feels that they belong, that they have a place,” Gina Ferrante, the school’s principal, adds.

“Even if you face challenges, those challenges aren’t necessarily the important part,” Guthrie concludes in the clip. “It’s more like, what are the skills that you do have that you’re going to use to move forward? It’s less about what are you struggling with, it’s more about how awesome can you be.”

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Why My Son Won't Have an IEP

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Recently we had our first taste of what an IEP would be for me son. He’s had an IFSP (individual family service plan) for the past year and half, and it’s been a process I’ve absolutely dreaded every single assessment. Each time they had to assess his skills, and then the subsequent 10-page report that outlined my son’s deficits, was earth-shattering.

Most parents brag about what their children can do and accomplish each day, but milestones are slow and hard to come by when you’re a parent of a child with developmental delays. You don’t measure success the same, and when you do reach a milestone, even months or years delayed, it’s a huge celebration. In one fell swoop, my joy and excitement for my child is crushed when I read words that say “developmental age 15 months,” “motor locomotive skills 15 months” and “cognitive delay.” It’s heart-wrenching.

I believe in no other part of society are children scrutinized and measured more in the medically fragile and developmentally delayed world. I’ve finally had enough. I’m not going to play the game of being the parent who just goes with the flow and says I’m OK with special education. In fact, I am not OK with special education.

Little boy.

My child is worth more than a test score or an assessment completed to determine his gross motor skills. My child has beat things a typical child most likely will never, ever entertain or experience. He sat on life support for six days. He was on a ventilator and bagged numerous times. We watched him cling to life, and now he’s a little boy who has beat all the odds.

Don’t stick my son on a chart and expect him to be like his peers. He is uniquely who he is meant to be. I believe he is the most perfect child God created and saved, and he deserves more than to be stuck on an IEP and given curriculum he may never meet or understand.

I’m not going to stick my son who has severe apraxia of speech, sensory processing disorder and dyspraxia into a traditional school that expects him to sit still for hours at a time and follow directions. My son is compelled to move and feel the world with his hands and feet. He experiences the world in an amazing way that I may never know. He sees and feels so much more than I know I can, and I want him to have every possible opportunity to open up that brilliant mind.

Inside my son is a brilliance I know won’t be unlocked inside a classroom. It will never prosper or thrive with teachers who forget about his disabilities or teach to a test. He will be one of too many because they are overworked and underpaid. I don’t blame the teachers but rather a system that I believe has become too much about regulation than the child. I’m standing up for my child. Today I’m saying he deserves more.

We dream of a day he will be able to have a job, maybe live on his own and potentially have skills to afford life on his own. We dream he will be able to speak clearly, touch and taste the world, and learn the way he learns best, and we know the only way we can achieve it is by taking control of his education. We are going to homeschool him. It’s controversial, and I’ve heard all the arguments about how it could completely ruin him. But I know it will be his best place to thrive. We can teach him while he swings on his therapy swing. We can do lessons while he plays on his Sit ‘n Spin. We can embrace his creative mind that builds and explores, and take the time we need to help him form his letters with writing.

Reading and writing will never be easy. We will take the extra time to make sure he’s not frustrated, rushed or has homework because he couldn’t finish in time. We are going to help him have better self-esteem by knowing if he puts his mind to it, he can do it. We are going to give him confidence to know that no matter what his prognosis is, he will learn and thrive. We will not let his disability define his chances at an independent life, but we know to get there we have to take a non-traditional way. We know we have to guide him, change our lives and do the best thing for him.

If you are struggling like I did in making this decision, I suggest praying for clarity and hope for a solution. If you know in your heart you know your child better, then have no fear in how it will work out. Have faith and trust that everything that is supposed to be will be.

My son is more than an IEP. He will not have an IEP at our school. He will be in his own school of awesomeness, and I can’t wait to watch him thrive.

Sitting boy sits on his mom's lap in front of pumpkins.

Follow this journey on Von’s Super Hero Facebook page.

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Parents Say Stunting Their Disabled Daughter’s Growth Is for the Best

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Due to infantile spasms, microcephaly and cerebral palsy, Jenn and Mark Hooper’s 10-year-old daughter Charley cannot see, walk or talk.

When Charley was a toddler, the Hoopers wondered how they could give their daughter the best quality of life, as well as proper care. Bathing and changing Charley, for example, were presenting themselves to be daunting tasks.

“I didn’t know a kid could be alive and be this disabled,” Jenn Hooper told The Mighty.

After researching a number of options, Hooper stumbled across an article about growth attenuation, a hormone treatment that stunts physical development.

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Image courtesy of Jenn Hooper

After weighing the risk factors, the Hoopers felt it was the right decision. Jenn Hooper says all indicators showed that Charley would not improve cognitively or physically, and at the end of the day, it came down to two questions: Is there anything Charley would gain by being allowed to grow bigger, and was there anything Charley would lose by being kept smaller? Hooper says the answer to both was a no.

After spending 20 months searching for a local specialist, the Hoopers started seeing a pediatric endocrinologist who agreed to help, but the family had to travel to South Korea to get the necessary hormones. Three years later, when Charley was 7, the Hoopers had their daughter’s uterus removed.

From high doses of hormones and the hysterectomy, Charley is currently about 4 feet, 3 inches tall and 53 pounds, and she’s expected to stay this size for the rest of her life. Her mom told The Mighty that Charley’s seizures stopped three days after she started the initial treatment, and aside from high levels of estrogen, her blood panels have all been normal over the years.

Image courtesy of Jenn Hooper

Hooper says the family took a close look at what Charley responded to in a positive way. If she continued to grow, Hooper believes Charley would have missed out on the few things that seem to give her pleasure, like traveling with the family.

“If there was some miracle and Charley said, ‘Look why did you do this to me?’ I believe I would be able to say to her that I did the best I could do,” Hooper told the Mighty. “All I’ve done is keep you smaller; it hasn’t changed your potential for anything. It was so you could keep doing the things we saw that you liked and so you could experience as much of life as we could give you.”

We haven’t stopped her doing anything. Growing would have stopped her doing things,” Hooper told the Associated Press. “We didn’t take away any choices that weren’t already taken from her.”

While the Hoopers stand by their decision, they’ve faced criticism from both parents and experts alike. Growth attenuation is not widely practiced, and the first documented case of a family using it for a child with special needs was in 2006, according to the AP.

“People are really entitled to grow and to become the people they were meant to be,” Margaret Nygren, CEO of the American Association on Intellectual and Developmental Disabilities, told the AP. “Would you ever want this kind of treatment done to you without your consent or knowledge? And if the answer is no, then why would one want to do that to someone else?”

Image courtesy of Jenn Hooper

Jenn Hooper believes the medical community should reexamine the process.

“I don’t think it should be made easy, but I don’t believe it ever should have been as hard as it was for us,” she told The Mighty.

Despite the fact that the ethics of their decision have been questioned, the Hoopers are trying to make the most of life with their daughter, and they’ve put together a Facebook page chronicling their quest to tick items off Charley’s bucket list.

“We don’t expect her to live forever. We don’t want her to live forever. Who wants this life forever?” Jenn Hooper told the AP. “So we give her the best life we can while we’ve got her.”

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To the TV Show That Made Fun of Kids Like My Sons

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To the people behind the show “Survivor’s Remorse,”

My heart sank when I saw a video clip with characters on your show describing kids with clefts using horrific words. In the clip, the characters talked about money for charity going to “the f***** up mouth kids,” and used terms like “snaggle teeth” and “weird lips.” I was angry, and then I was shocked it had passed all your producers for approval.

I was even more shocked to see Lebron James is one of your producers. Yes, the basketball player who has a foundation for children. I posted a thought-out, angry message to Lebron’s Facebook page and demanded an apology. I wondered, “Am I being one of those overly offended people?” Then I imagined someone saying those things to my boys one day, and that thought quickly passed.

But I also thought about my boys and what I would want them to do.

I asked myself, “Why not choose kindness instead?” We could turn something negative into something positive. I wanted to understand your side of the story, but I also wanted you to see ours.

You see, there are really ignorant people out there who say the things the characters on the show said. I believe that’s why it hits a nerve with so many people in our cleft community. This is the kind of ignorance our kids are going to face. It’s not too far from the kind of stuff I heard in the grocery store before my boys had their lip repairs, or the messages moms in our support groups receive from strangers. I also feel like it takes away from everything our kids have been through.

So I wrote this on the “Survivor’s Remorse” Facebook page hoping to educate a little and get a response from them:

“These are my two sweet boys. Do you see those amazing beautiful smiles? Those are mine… all mine. They have no idea they are different. I hope it always stays that way, but in my heart, I know one day it will change. Especially after seeing that horrible clip from your show degrading kids like mine. They call our children’s hospital the “wagon place” and get excited when we go, which is every week for therapy and every three months (alternating each son) for clinic…

“Our oldest (Preston) will be 6 years old next month. He is going to be evaluated for a bone graft soon, which is where they take bone from their hips and place it in their pre-maxilla. Our clinic days start at 9 a.m. and might end at 3 p.m. after all the tests and sometimes procedures. For instance, there is a procedure they do in clinic called a nasal endoscopy. My oldest has had three of these.They place a tube with a camera into his nose and down into his throat while he is awake. No sedation. Then, they have him say words to monitor the closing/gap of the muscle he uses to speak.

“That’s the hardest test, I think. To hold the hand of your kids and watch little tears stream down their faces while they bravely try to say these words with a tube in their nose and throat. He wants to be Batman when he grows up. So far he’s had nine surgeries. My youngest is 3 years old and is full of life. He’s had four surgeries so far, and with his second surgery he had breathing complications. This sometimes still keeps me awake at night. He also is working through sensory integration. He loves to dance and roll down his window just to say hello to someone walking down the street.

But do you see their smiles? Do you see them? What I have written is only a small part of what we have gone through as a family. Their smiles are our everything.

Please don’t use those words to demean them, and please don’t continue to ignore our community.”

Sincerely,

A mom who loves her two boys

Editor’s Note: Kayla’s Facebook message has been edited for clarity and brevity.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. 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 Share Your Story page for more about our submission guidelines.

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