I was at a friend’s graduation party when a family friend of hers who I had never met before asked me if I had been a “sheltered child.” I assumed he meant had I grown up with parents with conservative ideals so I said yes. “Ha!” he yelled, “That’s why you have asthma. Amish kids don’t get asthma because they’re outside all the time.” But before I could tell him I misunderstood his question and I had, in fact, been an outdoorsy kid, he said asthma was a mental problem and he had read about a mysterious “study” that supposedly stated Amish kids have lower rates of asthma than the general population.
This attitude has followed me my whole life, from the teachers who had no interest in helping me catch up when I missed school because I was sick to gym teachers who made me run until I blacked out to prove a point.
I’ve tried every medication there is. I’m on the most expensive and, apparently, most generally effective medication there is for adults with asthma like mine. And my asthma is still not what most people would probably deem “well controlled.”
A lot of people do grow out of asthma, yes, but some people don’t. Your cousin’s asthma may not be the same as the kid next door’s asthma. It can affect people in different ways. And no, it’s not in my head. I didn’t make part of my left lung collapse when I was a 7-year-old kid mentally. My parents didn’t cause me to have it by sheltering me. And no stranger ever has the right to approach anyone with any illness and try to dictate their own story back to them, invalidate them or give them crackpot “advice” about a “magical cure” as if we don’t know anything about our illnesses.
After 27 years of living with a chronic illness that interferes with my daily life, I know the most valuable thing you can do for any sick person, regardless of what kind of illness or disability they have, is to listen and validate. To really hear what they’re saying and not to try to interject because some things you hear might scare you or make you uncomfortable. It’s the complete opposite of what most of us, at least me, have experienced our whole lives, but it’s a crucial step in tearing down this strange victim-blaming culture I’ve seen in the chronic illness world.
We’re all making the best out of what we’ve been given. It’s not all in our heads. It’s real and it can be scary. Trust me, I know. But acting like our symptoms and illnesses don’t exist isn’t helping anyone.
In the United States, about 7 million children have asthma, a lung disease that inflames and narrows the airways, according to the National Heart, Lung and Blood Institute. Even though so many kids are affected, not all children understand why some of their classmates may have a hard time during recess or gym class. That’s where Medikidz steps in. This organization created a series of doctor-written comic books to explain medical conditions to children.
Their latest series followsa 10-year-old boy named Savion as he learns the science behind asthma and the importance of proper treatment for the disease. The most recent book in the series focuses on the right way to use an inhaler.
Medikidz and its partner Meda, a pharmaceutical company, believe education is the key to helping people living with asthma. In the United States, there are more than 3,600 deaths due to asthma each year, many of which are avoidable with proper treatment and care, according to the Asthma and Allergy Foundation of America.
“One of the best ways to help prevent these unnecessary deaths is to ensure that patients and caregivers have a better understanding what causes asthma, how to recognize worsening symptoms and the importance of listening to your doctor and taking your medication on a regular basis,” Stuart Loesch,Vice President of Marketing for Meda, told The Mighty in an email.
I’m not a doctor. I haven’t even made it to Season 4 of “Grey’s Anatomy” — yet. However, my son, Branko, attracts a lot of attention from amateur doctors, people who think they know a thing or two about medical science. Here are a handful of medical clichés people have shared with me over the years:
1. I would never get the flu shot; it doesn’t work, and I would never give it to my kid.
Personally, I think that’s a really bad idea, but beyond that, I’m pretty sure I wouldn’t let my son out of the house if the flu shot were unavailable. For him, influenza means a hospital visit with the possibility of a surprise intubation. (And FYI, a surprise intubation isn’t any more exciting and fun than a planned intubation.)
If you don’t want to get the flu shot, that’s fine. But please don’t tell me about it, because I will literally obsess over whether you have sniffles or not until flu season is over. And please, never mention that the flu vaccine “doesn’t work.” For my own sanity, I need to believe that it works.
2. My best friend’s cousin’s daughter’s aunt had the same thing as him and she’s fine now.
Part of the reason why I started writing about my son’s medical condition was to make the complexities of his condition more clear, for both myself and the people in our lives. He has a one-of-a-kind genetic condition; there isn’t even a name for what he has. No one else’s symptoms are quite like Branko’s. Nobody. No one. Zilch.
By casually mentioning someone had something similar and is now “fine,” the severity of his condition is downplayed. It’s a bit insulting. Having bones like his — ones that randomly grow however and wherever they feel like — is serious business. It’s not a sunburn. It’s not a canker sore. It’s not even the same as when your friend, Sammy, had a cast for two weeks after falling off a Pogo Ball.
Also, what does exactly “fine” even mean? Is “fine” the same as being an average, healthy person who doesn’t need a mobility device? We aren’t really striving for a typical definition of “fine” over here; I suppose our definition is a bit more relaxed. “Fine” at our house means happy and stable, whether he’s in a wheelchair, a hospital bed or running around the backyard with no pants on.
3. All those chemicals and drugs can’t be good for him.
There seems to be a growing trend where completely sane and rational people, without a chemistry degree in sight, all of a sudden become experts on the chemicals in our daily lives. My son wouldn’t be alive today without plastics, drugs or vaccines. Please don’t be offended if you catch me rolling my eyes during most conversations about the avoidance of preservatives, food coloring, GMOs, sunscreen or Kraft dinners.
I once saw a person wrinkle her nose when I said we were giving Branko morphine as part of his pain-management plan. He had just had major orthopedic surgery on both legs, in which the bones were literally ripped apart and put in again with metal rods.
“Should you be giving morphine to a child so young?” she asked.
All of a sudden, I was frightened of “Big Bad Morphine.” I second-guessed myself at first, but my gut said stick to the plan. Turns out, doctors usually know what they’re doing. Morphine worked wonders for Branko, getting him through the initial, more painful period, and allowing his bones to heal.
4. It sounds like he’s been misdiagnosed. He should try going to (fill in the blank) hospital.
Uh-oh. Wait. Not only is this very confusing information, coming from someone who isn’t a doctor, but it also makes me nervous. Have I been doing everything wrong? Should I drive six hours to that other children’s hospital? Are there other surgeons with more experience who I should be seeking out? Why do I suck at being a hospital mom?
This advice came to me from another mom of a boy with a genetic disease. She felt strongly that Branko was misdiagnosed and had the same thing as her son.
Perhaps she felt we might have a stronger connection if our kids had the same thing. She had a negative experience at our hospital and felt a need to sway people from it. Some would definitely find her advice helpful; I found it a bit sad. We had a chance to bond over our shared experiences, to be special-needs-mom allies, partners in crime. But it didn’t turn out that way.
Over the years, I’ve become more savvy at deflecting medical advice from non-doctors. My secret: I kindly say “no thank you” followed by “I get all my medical advice from Dr. House and Dr. Grey.” That usually does the trick.
In August 2012, Robyn Rosenberger thought it would be fun to sew a superhero cape for her nephew for his birthday. She’d never made a cape before and it was her first sewing project, but she enjoyed it and continued to make capes for her son, her dog and her friends’ children that same year.
During this time, she was following the site Blessed by Brenna, a blog about a young girl around her son’s age who was born with a severe skin disorder called harlequin ichthyosis. Rosenberger was reading Brenna’s story on her phone while rocking her son to sleep one night when she had an “aha” moment.
“Brenna needed a cape,” Rosenberger told The Mighty in an email. “My son looked super cute in one, but Brenna needed one.”
Rosenberger sent Super Brenna a custom-made cape in January 2013. With that, TinySuperheroes, a small business that sends homemade capes to children living with illnesses or disabilities, was born.
Rosenberger runs TinySuperheroes out of her home in Saint Louis, Missouri. The capes are custom-made, come in a variety of sizes and colors and each feature the child recipient’s first initial. Families can purchase a cape for their child or nominate a loved one to be placed on the TinySuperheroes waiting list. With every cape purchased, an additional cape goes to a child on the waiting list.
As of summer 2015, Rosenberger has sent more than 6,000 capes to kids all over the world. But, she says, she’s just getting started.
Rosenberger can recall the exact moment she realized TinySuperheroes was her calling. She received an email from a father whose son had passed away days after receiving his cape. He wanted her to know the impact it had on his son and on their family was so great they decided to have him buried in his cape.
“This is the hardest part of this journey, to know that some of our TinySuperheroes will not make it to kindergarten, or to their 16th birthdays,” Rosenberger told The Mighty. “But to know that I have the opportunity to provide something tangible that could provide a single ounce of joy to a family during the most difficult moment of their lives meant that I was in this for the long haul.”
Rosenberger hopes TinySuperheroes helps the children feel empowered and proud of who they are. She wants families to feel bolstered and encouraged when they see their children wearing the capes.
But more than anything, Rosenberger hopes TinySuperheroes can change the way the world thinks about illness and disability in children.
“I hope that through superhero capes, we can train people to see their TinySuperPowers instead of their differences,” she told The Mighty.
Learn more about the TinySuperheroes mission in the video below.
To learn more about this project or to order a cape for the tiny superhero in your life, visit the TinySuperheroes website.
1. “Always have patience. Always do research and always make the person living with this disease feel like they aren’t alone in this world. Make them feel loved, make them smile and make them laugh every day, even if you’re sad.” — Chirag Lalwani
2. “Never to take anything for granted. Health isn’t guaranteed. Just because someone looks healthy doesn’t mean they are. Never park illegally in a handicapped parking space. Everyone should know CPR and first aid. There’s always something to be thankful for, no matter how bad it gets. When someone offers help, take it.” — Lexi Hafften
3. “Each person has his or her own journey in life. My mom taught me it’s OK to let go without sorrow. She taught me that death isn’t scary. It’s the process of life.” — Charlotta ‘Madsen’ Bernau
4. “I grew up learning to appreciate the good days, the good times. And I learned how to laugh, even when it wasn’t one of the good days. Now I’m the parent, and I was diagnosed with MS two years ago. I’m grateful for perspective and patience.” — Sarah Sorensen
5. “I’ve learned to appreciate every moment I get to spend with my mom, especially on her better days. I’ve become more empathetic toward others when they’re having bad days. MS is so multifaceted. It’s a part of our life in every way, and I do all I can to help my mom stay as healthy as possible.” — Amber Lively
6. “It’s heartbreaking to helplessly watch the decline, but it’s amazing to see his faith, spirit and positivity. It provides the rest of us with new perspectives. We celebrate the good days and push through the tough times. Memories can be made no matter what kind of day it is.” — Page Almond
7. “Not every disability is visible. Life is beyond precious, and you need to live each and every day to the fullest. Though my mother has never had a relapse, it doesn’t mean it couldn’t happen. She’s taught me that not all heroes wear capes, and no matter how bad things are in life, like being diagnosed with an incurable disease, there are so many more positive things.” — Marian McWilliams
8. “It’s a disease that is different for everyone, so learning to deal with it is different for everyone. I have come to learn to be at peace with MS, support my dad as much as I can and continue with making memories for him. It’s a disease that affects families, not just the person who has the disease — my mother is his carer, and I often forget that she too can struggle and need help.” — Debi Allen
9. “Humor plays a large part in how one handles the challenges of MS. You can take a lot in stride with humor.” — Vicki Knudsen
10. “No matter the struggles, life goes on… My mother has [MS], and it pushes me every day to be a better person.” — Ashton Hathaway
11. “Cherish every moment… I know tomorrow is not promised and, in the MS world, tomorrow could mean her not being able to walk or use her hands. But watching her play with [my children] on a good day is the best thing ever.” — Tiffany Richards Riesenberger
12. “Your mom or dad may change, but you have to learn to let go of who they used to be before MS and embrace who they are now. It hurts, but you have to come to grips with what’s going on and try to open your mind. Get to know your mom or dad again.” — Toca Bell
13. “Be grateful for her good days, accept her bad days, and [be] grateful for [your] own health. Just because someone doesn’t ‘look sick’ doesn’t mean they aren’t. But mostly, I learned that my mama is just as good as anyone else’s. Her disease never stood in the way of her being a good mother.” — Maddy Harsh-Burgerpatty
14. “Family can be a backbone of support. We rally together and support one another through this.” — Alexandra Marie
15. “Appreciate the important things in life. In school, having the newest [shoes] didn’t matter, but helping at home and trying to make my parents’ life a bit easier was so important.” — Natalie Reeve
16. “[I’ve learned] how strong my mom actually is. She is constantly in some sort of pain or is utterly exhausted, but never, ever, does she let it show. She doesn’t let work, family or life get in the way… Never will I give up, because my mom never has.” — Sarah Morris
*Some responses have been edited for brevity and clarity.
1. “It’s not a part of getting older. There’s a misconception that as you get older you become forgetful and Alzheimer’s is just a continuation of aging, but it’s not. It’s a terrible disease, not a part of aging. It’s not something that’s inevitable or just happens. It’s something we’re trying to fight to bring awareness to because with funding and research there can be hope.” — Stephanie Vasquez
2. “Be patient with those who suffer. Repeating and forgetting require compassionate responses, not exasperated ones. The disease might hide the person underneath, but there’s still a person in there who needs your love and attention.” — Jamie Calandriello
3. “I wish people understood how scary it must be for the person going through it.” — Tbird O’Leary
4. “The disease is still progressing… even though helpful medication exists, there’s still no cure, and we have to keep fighting to find one.” — Sally Noelle
5. “Just because he looks fine at this moment doesn’t mean it will be the same in five minutes, tonight or tomorrow.” — Nikki Dodson
6. “[People with Alzheimer’s] can’t change the way it makes them act anymore than a cancer patient can keep the cancer cells from spreading.” — Brandyn Shoemaker
7. “I wish the world knew how heartbreaking it is to stand beside the woman who was the first one to ever call you by your name and realize she doesn’t know who you are. I wish they knew the joy it brings when she suddenly looks up at you after you’ve sat there for hours massaging her hands with lotion and says, ‘I love you, kid.’ It’s extremely hard to mourn the loss of my lifetime companion, my mother, while she’s still alive.” — Nancy Elizabeth Faram
8. “Rational thinking is gradually lost with Alzheimer’s, so don’t try to reason with someone with this disorder. Instead, distract them in as gentle a manner as possible. If they get angry or defensive, listen until they’ve said what they need to say. And remember, each time you interrupt or argue, you increase the duration of the conversation without resolving the issue.” — Rex Bierley
9. “It’s not simply forgetting things and people. It’s delusions, hallucinations, anger, poor judgment and personality altering. These things can come and go and the person suffering and their loved ones are on a continual and unknown roller coaster.” — Kimberly Crawford Bowman
11. “The reality of this disease is that there’s no remission, there’s no stopping it, there’s no slowing it down, there’s no cure and there are no survivors.” — Suzanne Tackett
12. “One moment there’s clarity, and they look at you lovingly and say your name. A second later, they look at you frightened or confused because you look familiar or they don’t know you at all.” — Samwise Gamegee Works
13. “Even though behaviors have changed — the person you remember is still in there.” — Roxzan Sukola
15. “It’s not just memory loss. It robs the person of who they are and the ability to do the most basic tasks.” — Janice La Bella
16. “Losing some memories doesn’t make the still present ones any less important and meaningful.” — Molly Halla
17. “I wish people wouldn’t ask how my mom is doing or if she’ll get better. I wish people understood that Alzheimer’s is currently a terminal disease and that caregivers have to watch their loved ones waste away in front of their eyes. It’s often a painful thing to discuss [because] every time they ask, the person is worse than before.” — Michelle Raza
18. “[It’s] devastating when a person who helped raise you completely forgets who you are.” — Odalys De Leon
21. “It’s the worst. People can’t handle it so they stay away. It’s isolating and lonely.” — Lisa Begley
22. “Although your loved one may not remember you or might do things that frustrate you, this is the time when he or she needs you the most. Your loved one needs you to care, to advocate, to be patient, to love and to be vigilant. Don’t turn your back on them.” — Angie Nunez Merryman
23. “I wish doctors would realize that the person with Alzheimer’s has thoughts and feelings about their care. Look the patient in the eye instead of talking to a family member and asking them questions as if the person who has Alzheimer’s isn’t there.” — Cynthia Adams McGrath
24. “You can’t explain what it’s like to mourn someone who’s still alive unless you’ve experienced it firsthand. It truly is the long goodbye.” — Jessica Seay-Soto
25. “[It’s] important to remember those who are suffering from Alzheimer’s as they were before the disease and to keep that person in mind when learning to cope with the disease.” — alib13
26. “The person who has Alzheimer’s knows that pieces of the puzzle are missing, and they are terrified.” — sheilamcphierasak
27. “To lose a loved one is always sad, but losing a loved one bit by bit is so sad. It’s horrible to watch someone you love struggling to find words and trying to remember things they realize they should know. You feel so helpless seeing someone looking lost, and you try to take away that fear.” — Jeanette Maxwell
28. “I wish people understood the unique experience of grief and loss that comes with Alzheimer’s. My dad was 64 when he was diagnosed, and we’ve been living the loss of him for four years now, even though he is still in our presence. I can still hold my dad’s hand, but I miss him every day.” — Anna Copley
29. “Alzheimer’s patients are people, not patients. They are husbands, wives, brothers, sisters, bosses, employees, sons and daughters, all of whom were robbed of time and the ability to continue to chase their dreams and live their lives freely.” – nicoleadeline
30. “Referencing ‘The Notebook’ doesn’t mean anything to me. [My mother] not recognizing me is the least of my worries because she no longer knows how to swallow.” — fancyy77
31. “It can happen to anyone, young and old… my dad was 49 when diagnosed.” — karli_anne1012
32. “I wish other people would understand that the person affected by Alzheimer’s is not a child or a toddler, as I have heard people casually say to me. Yes, they have childlike qualities, but people have to understand this individual is still an adult, and you can’t treat them as you would a kid. My mom can notice when she’s not getting the respect she deserve.” — a11ofthelights1832
33. “They may not be able remember who we are, but they feel us just the same.” — Amanda Dillon
What would you add to this list? Let us know in the comments below.