Michaela Shelley

@michaela-shelley | contributor
Michaela is 18 years old and both herself and her brother (Tyler, 11) have been fighting multiple chronic illnesses for several years now. You can read all of her blogs at Chronicallyawesome23.blogspot.com

A Letter to Teens Recently Diagnosed With a Chronic Illness

I know it was quite a shock to you, having been thrown into the world of chronic illnesses. I bet the first day you woke up sick it never crossed your mind that you wouldn’t get better, but soon days, weeks and months went by and your health never changed. It seemed like you would never get well again. You probably went from doctor to doctor to try to figure out what was causing havoc inside your body. If it was anything like my fight, you spent months trying to find a diagnosis. Suddenly your days will be consumed with hospital stays, doctor’s appointments, medications and procedures. However, don’t let this become your life because it’s not your life. Cherish the days when you get to enjoy your teenage years. Take the opportunity when given to go out and enjoy the typical teenage milestones such as Friday night football games, high school, prom and parties. You won’t get to experience many of these events again. These are going to be the days that help you carry on this fight. When you’re at your worst and it seems like nothing will ever get better, you’ll want to remember the times when life was at its highest because those days will show you life does get better. Amid the failed treatments, painful procedures and hopeless nights, you’ll find that this rose surely has its thorns, but it also has its beauty and you can’t let the thorns of this life distract you from the beauty lying within it. No matter what type of chronic illness you are facing, this fight will be difficult beyond compare. There will be days when the symptoms plaguing your body will be too hard to bare, but I want you to know you aren’t alone. Many other teenagers out there in the world, including myself, are facing the same challenges. I know just how hard it can be having to fight your own body like it’s a civil war, but I know you will be able to do this. I believe in you. From, Michaela Shelley A Chronically Ill Teenager Lead photo source: Thinkstock Images

What Living With Gastroparesis Feels Like

August is Gastroparesis Awareness Month. Gastroparesis is a digestive condition that causes the stomach to be unable to empty and digest food properly.  This condition affects approximately one in 25 Americans. Although the disease may seem fairly common, it is hardly known. Those who have the illness face many challenges as the disease is quite complex and can be fairly complicated to treat. I could tell you the medical definition of gastroparesis (GP)… but that wouldn’t show you just how terrible it is. This is gastroparesis through the eyes of the many patients struggling with this condition: GP is sitting in the bathroom puking your guts out. GP is going out to dinner and just ordering a drink. GP is spending holidays in the hospital. GP is falling asleep on the bathroom floor puking. GP is my worst enemy. GP is not being able to eat your own birthday cake. GP is the reason I look six months pregnant after eating. GP is the reason I sit at the dinner table hooked up to an IV pole watching my family eat dinner. GP is starving to eat but you can’t. GP is why I have a hospital in my house. GP is starving to death. GP is trips to the emergency room at 3 a.m. GP is why I lost my best friend. GP is constant nausea, tears and pain. GP is like having the flu every day of your life. GP is not being able to sleep because the pain is so bad. GP is the devil that stole my body. GP is having the simplest action taken away from you. GP is the reason the words “Have you lost weight? You look so good!” aren’t appealing to me anymore. GP is the reason I’m getting a treatment that is helping me survive, but the complications may kill me. GP is putting your life on pause because you are simply trying to consume food. GP is slowly killing me. Gastroparesis is more than just a paralyzed stomach. Gastroparesis has broken me, hurt me, tore me down, and made me feel so many emotions I don’t ever want to feel. Think this is too harsh? Think again. This is the reality of thousands all over the world who are fighting for a normal life. GP is a battle that’s effected my life in many negative ways, but also positive ways. GP is making me stronger. GP is the reason I’m closer to my family than I’ve ever been. GP is the reason I’ve learned the real meaning behind “in sickness and in health” GP is why I want to be a nurse. GP is a challenge that’s given me strength and courage. GP is tough, but I am tougher. GP is why my fiancé and I have dates next to the toilet. GP is being able to see life through a new perspective. GP is why I’ve met so many brave warriors. GP is what makes me weak, but therefore I am strong. These are the quotes of the many living with gastroparesis who deserve a cure more than anything.

I Used to Hate the Color Green. Here's Why I Don't Anymore.

I used to hate the color green. As a child my favorite color was always blue and purple. To be honest, I thought green was an ugly color. My mind quickly changed when my brother was diagnosed with mitochondrial disease. The color green became a symbol. Green is the color of the awareness ribbon for mitochondrial disease. On April 16, 2011 my life changed in one short moment, and nothing has ever been the same since. There are some memories that are etched into your brain like an Etch-A-Sketch. However, you are unable to erase them. You can’t just shake the memories out of your brain and hope that the page will be cleared away. No matter how hard I try, I can’t get April 16, 2011 out of my head. That day will always be written down as the worst day of my life. On that spring Saturday, my youngest brother, Tyler, had a seizure in my arms. I was only 11. I remember screaming forhelp, thinking this was all my fault. The worst part was seeing my 9-year-old brother, Brycen, see his brother being carried out the door seizing. Brycen had never seen Tyler’s first seizure, so this was all new for him. He didn’t handle it well, but I could say the same for myself, even though I’d seen it before. We both collapsed to the floor. All he did was scream, and all I did was cry. We were all alone. We laid there on the floor for what seemed like hours. I could hardly console him, much less myself. We didn’t know if our brother would survive the night. Tyler did make it, but he was unconscious laying in a bed in the Pediatric Intensive Care Unit when we saw him again. His little 5-year-old body received a beating. He’d turned blue within minutes of my parents rushing him out of the house. We didn’t call an ambulance because last time it took well over an hour for one to reach our house. Tyler didn’t have that time. He spent over two hours seizing that night and the next 24 hours unconscious, but he pulled through without any lasting effects. The next week Tyler was diagnosed with mitochondrial disease. Mitochondrial disease is a degenerative genetic disorder with no cure. I cried. Our family had known a little boy with this disease. His name was Zach and he was only 3, but he was so sick. Hepassed away two months after my brother was diagnosed. From that day forward Tyler became my best friend. I set out to find a cure to save him, but little did anyone know, I would need that cure for myself as well. My life would never be the same. It happened so fast, and I lost all control. The perfect happy life I once had no longer existed. It was like my life was sucked up into a tornado, spit back out again and shattered into a million and one pieces. The first time I became sick I had to stop eating all food. Yes, all food! Imagine living a life without Halloween candy, Christmas cookies, Easter eggs and even your own birthday cake! I received a feeding tube. I got better; I was so thankful. I thought maybe this was it. I knew I could manage this. It was not even close to compare to what my brother goes through every day, I reasoned. I was OK. I found my new normal, although life was anything but normal. Nine months after I put my life back together, it shattered again. The catch was this time it would be so much worse. My feeding tube was no longer working. Everyone told me this would never happen. I cried and cried. The strain mentally was almost as bad as it was physically. I knew what all this meant. I already knew what I would soon be facing because I’ve seen my brother face this fight. I think that was the worst part — knowing what was before me. That little 15-year-old me was so scared. Just a few months later, I had a pediatric specialist tell me I would never get better, and even if I did I would still be very sick and rely on tubes to keep me alive. How can doctors tell a person there’s nothing they can do to make things OK again? Like dominos, my organs have started to fall down and fail one by one. Organs failing right in front of your eyes and there’s nothing you can do about it. No treatment. No radiation. No chance of remission. No surgery. No magic pill. And worst of all no cure. So here I am two years later still breathing, still living and still fighting. I’ve rebuilt my life to the best of my abilities. I’m still out there living my life just as any other person would because, just like you, I don’t know what tomorrow will bring. Maybe not todaybut five years from now the doctors will be able to find a cure. I’ve been able to bring awareness about this disease on an international level. When I set out to find a cure to save my brother I never expected I would have all these opportunities available to help me do so. I’m still out there searching and fighting for a cure. It’s not only about my brother anymore. It’s about that child who is born every 30 minutes who will develop mitochondrial disease by age 10, the child who lost their sister or brother to the disease, the parents who are struggling to find a diagnosis for their child, the mom who is unable to take care of her four children because she is too ill, the teenager who is fighting to make itthrough high school despite their illness, and anyone who is still pursuing their dreams even though their body is failing them. The color green isn’t so bad anymore. It is now one of my favorite colors (next to blue, of course). Mitochondrial disease hasbecome a blessing and a curse. Without mitochondrial disease I would have never had some of these amazing experiences I’ve been gifted with, but it’s also a curse as I see my body slowly shut down on me. My life may not have a happy ending, but it’s not about the happy ending. It’s about the story, and if you ask me I think it’s a damn good story. The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to community@themighty.com. 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.

To the People Who Ask Me What It’s Like to Be Around Food When I Can’t Eat

The question I seem to get all the time is, “How does it feel to sit at the dinner table while everyone else is eating, when you can’t eat?” I swear my answer is almost always the same, and I have it memorized by now. Honestly, it does not bother me as much as some think, but it is different for every person. My parents have never forced us to sit at the dinner table if we don’t want to. Typically for me, I spend that time in my room doing homework or I go into the shower so I can’t smell the food being cooked downstairs. Family dinner is not as big of a deal in my house as it is for some. Out of the six of us who live in my house, a third of us are unable to eat any sort of meal. My parents have tried to instill the idea that food is not a central role in our life. However, look at just how much food is involved in our daily lives — b illboards, advertisements, Halloween candy, Thanksgiving, peanuts at a baseball game, dinner dates, birthday cake, Easter eggs, Christmas cookies, any sort of party, and even going to the movie theater and getting popcorn to enjoy are all trends in our society. Although the world needs food to survive, we also need to realize just how big of a deal food has become in our lives. What if you had to sit in the lunchroom at school and watch everyone eat pizza? The catch is that you can’t eat it. You can smell and see the pizza, but you are only allowed to sit there and watch the others eat. The situation is similar to putting a treat out in front of a dog but not allowing them to eat the treat. There are many situations when I’m unable to avoid sitting down at the table while others eat. While being around food doesn’t bother me as much as some, it is still challenging for me. No matter what the situation is, it can be difficult to watch everyone do something you are unable to do. For me, that something would be eating food. Being unable to eat food is not only about the physical consequences of eating; it is also about the social and emotional aspects that come along with it. Although I may want the food, I just can’t have it. If I choose to “cheat” and eat food, there will certainly be consequences, and I don’t mean sitting in timeout for 15 minutes. Because of my chronic illnesses, the consequences consist of nausea, vomiting, abdominal pain, cramping and I could go on and on… The only times I cheat and eat food is when food is in front of me as part of a social event. I do have more self-control at my age to know that I can’t eat the food in front of me because it will make me sick, but I have to admit that I can’t always handle that craving of wanting food so bad. I know it will make me sick, but I do it anyway. Most of the time I don’t allow myself to do that, but sometimes I can’t wrestle in my mind what’s worse: the physical consequences of eating food or the mental consequences of watching the world do something you would give anything to do. If it’s hard enough for me to sit there, imagine being several years younger than myself. My brother who also has chronic illness is only 10 years old and has never truly been able to eat food ever. I can only imagine what war goes on in his head — t he mental battle between doing what’s best for your health and how you feel but also struggling with the mental realities of what it’s like to live a life without food. I am thankful to live in a household that realizes food doesn’t need to be the central aspect of our lives. I know I can come home and have a place where I don’t have to worry about food. I understand we are unable to make the world change because of how I and others have to live, but I wish people could become more understanding and compassionate toward those of us who have to live a life without food. The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to community@themighty.com. 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.

What They Don't Tell You About Being a Teen With a Chronic Illness

Life as a teenager can be overwhelming. Between the stress of trying to juggle schoolwork with extracurricular activities and the typical teenager drama, one can become exhausted. When you’re a teen with chronic illness like me, you have to manage all the basic high school struggles but also deal with the daunting task of keeping your health in check to make sure you’re even able to attend school regularly. When you’re first diagnosed with a chronic illness, the doctor is there to tell you about the side effects and how it will affect your health. What doctors are less able to explain is how it will affect your day-to-day life and mental state. 1. You will probably lose friends. Chronic illnesses affect relationships. When you’re lying in bed for days on end unable to go to school, people sometimes forget about you. You won’t get to be at school every second of the day to spend time with them. When you can’t attend social events like Friday night football games or going out to grab a slice of pizza, people sometimes stop inviting you. It feels like no one wants to hang out with the kid who’s always sick and can’t get out of the house. There will be a few friends who stick around, but the big group of friends you thought you had might not understand the challenges you face. But even though many choose to walk out, you learn who your true friends are when you live with a chronic illness. 2. There will be plenty of bad days to go around. Maybe doctors do tell you this, but I think it’s only implied rather than clearly stated. The times you’re at your lowest, you’ll think you’re never going to get better and life is going to continue on like this forever. But that’s not true. Everyone has moments in life that are particularly hard. The only tip I have to offer is to try not to take out your anger on anyone else. This disease is an emotional roller coaster, and sometimes you may say things you don’t really mean. You have every right to be mad and upset because it’s not fair you’ve been stuck in this position, but try to direct that anger somewhere else. What happened to you isn’t anyone’s fault. 3. Most people won’t understand what you’ re going through. This is a great quote I remember on one of my favorite TV shows, “House M.D.“: “I see people with disabilities all the time, but seeing and understanding aren’t always the same thing.” The people you surround yourself with will see what a struggle you face on a daily basis, but they won’t live what you feel. You’re the only one who will ever understand just how horrific the pain can be. They will think they know how you’re feeling because they see the struggle, but they don’t feel the struggle. People with chronic illnesses want to try to live normal lives but sometimes can’t. Many don’t understand why we might have to cancel plans when our bodies aren’t cooperating. Try to remind your friends that what they can see and what you feel might be two different views about your health. Being a teenager can be an overwhelming experience for anyone. When you add having a chronic illness to the mix, it can be even more emotionally taxing. Many doctors understand medicine, but they don’t understand how your chronic illness can affect you in other ways. You probably won’t be prepared for what pops up in your chronic illness journey. You just have to take a big deep breath and face the problem head on, because that’s all you can do. The journey is scary, and there are many unknowns, but I hope knowing some of these things will help a teen who is recently diagnosed understand their journey a little better. Follow this journey on It’s Not as Easy as You Think. The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. 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.

What I Wish People Understood About Teenagers With Chronic Illnesses

I think people often forget about the sick teenagers. We aren’t adults yet, but we aren’t little kids either. We can understand what the doctors are doing to us and why. Sadly, what comes with that is sometimes knowing we’re going to have to feel worse before we can feel better. We are sick at a time of our lives when others might feel invincible. You might think nothing can ever stop you in this world and then — boom — life isn’t in your control anymore. As a teenager, I want to have that control, and not having it makes it hard to cope. Teenagers like me are able to understand what’s happening even if we don’t fully get it. We don’t have the experience adults typically have, which can make things confusing and complicated at times. Being sick and dealing with all those added emotions on top of trying to manage a normal-teenager life is quite the ordeal. We’re at that age when we gain more independence, like being able to go out with friends without our parents, driving or for some people, heading off to college. But just imagine being 14 or even 18 and suddenly having all your independence stripped from you. What if you needed someone to help you get up to go to the bathroom, to walk, to shower, to help give you your needed medications, to take you to your doctor’s appointments, and to have someone be there at the hospital with you during your stays? I think that’s pretty difficult for a grown adult to grasp, much less a teenager. Our friends can’t always relate to us because they might not understand. They don’t know what it’s like to be sick and not have the energy to get out of bed in the morning. We might want to go to school, but we just can’t. Missing out on social events and the daily aspects of life because of hospital stays, treatments and doctor’s appointments can make us feel isolated. Life goes on with or without you, and life often has to go on without you when you’re busy being sick in the hospital and not able to do anything. It’s hard enough being a teenager and figuring out what you want to make of yourself and grow up to be. Adding on a chronic illness can make that 10 times harder. Sometimes I feel like 98 percent of the time, life never goes my way. If life went my way, I wouldn’t be sick. I wouldn’t have all these diseases that people can’t pronounce or haven’t heard of. I wouldn’t have all these tubes sticking out of my body, and I wouldn’t be taking all these pills I’m taking now. I’d be healthy, and I’d be back playing soccer, attending school every day and finishing school on time. Some of us have grown up being sick and in the hospital, but to others, it’s a whole new world. The younger kids might not know what’s happening. Sometimes they’re left in the dark about many things; they don’t know why they’re getting sick from medicine or if their treatment plan is even working. But we teenagers can experience the bad news firsthand. We can see our parents cry and understand that pain, too. We might cry, too, because we know something bad and scary is happening. We’ve already been exposed to life as it is, and we know what’s supposed to happen and what isn’t. We are very capable of understanding what’s going on in our bodies. We might be just like any other young adult except we have these extra challenges in front of us. My disease doesn’t inhibit my ability to comprehend what you’re saying. I’m not a little kid, so don’t treat me like that. All I am asking is this: please don’t forget us. Treat us like any other teen would be treated; however, understand we may not be able to do everything our peers do, and sometimes it might be hard for us to express how we feel when so many emotions overwhelm us. It can be hard for us to share exactly how we feel because most days we might not even know. It’s not an easy journey. Treat us like any normal teenager and help us along the way, but also give us some space. That’s the only thing I truly want. Follow this journey on It’s Not As Easy As You Think. 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 community@themighty.com. 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.

10 Things I’d Like People to Know About Living With a Chronic Illness

I’m 17, going into my senior year of high school and I have mitochondrial disease. I am dependent upon feeding tubes, IV nutrition and countless medications to keep my body working every day. I need plenty of help just to get through the day, and it’s definitely not easy at all! Thankfully, I have a wonderful support system. Despite all of this, I try and live past my illness every day and continue to try and do the things I love even though my disease has taken a lot away from me. Here are the things I’d like you to understand about living with a chronic illness. 1. People always say, “You are too young to be in that much pain.” Chronic illnesses don’t discriminate. It doesn’t matter your what your age, race or gender is. It doesn’t matter where you live. All children, adolescents, young adults, adults and the elderly are at a risk of developing and managing a chronic illness. 2. “But you look perfectly fine.” That’s the problem, we aren’t “just fine.” Our disease is invisible to the naked eye, but if you turned our bodies inside out, you’d see the real damage our disease has caused us. The reason people with chronic illnesses look fine is because their illnesses can be invisible, so that’s why they’re also known as invisible illnesses. 3. We don’t cancel plans on purpose or because we don’t want to hang out with you. Trust me! We would do anything to be normal and just hang out with friends, but sometimes we are too sick to even get out of bed. Please understand we don’t mean to cancel at the last minute, but this disease effects us daily and how we feel changes daily. One day we’re able to go out to a movie with friends and then the next we’re lying in a hospital bed. 4. Lying in bed all day is not a luxury. Netflix and the Internet can only entertain you so much. After a few hours, you start to get bored and want to experience a typical life. One other thing: Don’t wish you were us and say you want to live like we do because it’s definitely not glamorous. Many of us would much rather be working or hanging out with friends. 5. “It’s all in your head.” This is a common saying a lot of people with chronic illnesses have heard. It’s not psychological. It’s real and causes very severe physical effects to the body. 6. Don’t pity us. We can do most everything you can do. We just have some extra challenges in the way. It may take some extra time, but we’ll get there eventually. Try not to focus on the “I can’t” and look at what an amazing person we really are. We get enough pity from random strangers, so we don’t need it from friends and family. 7. If you don’t know about our disease, just ask. We’ll be more than happy to explain it to you so you can understand more about our condition. Information found online may not be entirely accurate or related to the specific diagnosis we have. Never assume that you know it all when more than likely you don’t. So please don’t come up to us saying you’ve found our miracle cure because more than likely you haven’t. 8. Most importantly, we’re not lazy. People with chronic illness might also deal with chronic fatigue, and that just wears us out. Imagine if you were fighting a battle against your own body. Your body has to do both parts of the fighting here! Can you imagine how much energy that takes? We try to keep caught up with work and school and not stay in bed and sleep all the time, but it does get hard. 9. “If only you would exercise more.” I’ve heard this one too many times before. Your physical strength does play a role in chronic illnesses, but, trust me, we try to keep pushing through and do as much as we can. However, our disease can limit the amount of energy and strength we have so this makes exercising difficult. There are some chronic illnesses which require the patient to not exercise at all. The patient’s physician will be able to tell whether exercise would be beneficial. 10. “If only you were more positive, then you would feel better.” People with chronic illnesses are some of the bravest and happiest people I’ve ever met. They love life for what it is because they all know life is short and you don’t get an extra chance. It’s hard to be positive every day when nothing ever seems to be going right and you’re in so much pain. Everyone is entitled to feel negatively every once in a while. A version of this post originally appeared on It’s Not as Easy as You Think. The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to community@themighty.com. 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. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

When the Brother I Share a Disease With Made Me an Unforgettable Offer

Almost a year ago while on a beach getaway, my family sat in a nice restaurant eating a delicious dinner. Well almost all of us… You see, my brother Tyler and I have a disease that makes our digestive tracts unable to move and digest food properly in our gastrointestinal tracts. Due to the severity of the disease, we’re both fed through a central line in our chest that gets the nutrients straight into the blood and bypasses the digestive tract. Everything the average person eats on a daily basis we can’t have. Sitting at that dinner table that night was particularly difficult for Tyler. He was only 9 at the time and was starting to realize he’s different than everyone else. Having to watch people do something we can’t do, like eat, feels like torture. Thankfully at home our parents don’t request us to sit at the table with them while they eat. We have an “open door” policy. If you want to sit down with the family you can. If you don’t want to sit down with them for dinner you’re able to do what you need. This there wasn’t an option. There was no place to escape to that would allow us to get away from the aroma. As I saw Tyler struggling I offered to take him outside to the back patio because I knew it was hard for me to sit in there, much less a little boy to sit and watch everyone eat. We found some nice rocking chairs to sit in and started making silly little jokes — anything to get our mind off things. Soon we paused. Looking out into the ocean, he began to speak and said, “You know what?” I replied, “What?” He proceeded to tell me that if I didn’t need to have tubes, if he was the only one that was sick with tubes, he would do it. I don’t like my tubes at all, but I would do it! I broke down. That little boy didn’t know one reason why I was crying. He thought he’d made me upset, and I just took him into a big embrace. We stayed that way for what seemed like hours. My little man was so selfless, and he always worried about me and how I was feeling when he should be worried about himself. I’m supposed to be the one who worries about him. Mentally, the disease puts a big strain on his little mind, which can’t comprehend all of what’s happened. Yet, Tyler is the one telling everyone else to stay strong. Tyler and I have always had the closest relationship. I believe we became best friends for that reason. We were close before we were both critically ill, but after, we both became each other’s biggest supporters. I understand many of the emotions he has and help him through them, and there are some procedures helps me through. It’s tough to see the fear and worry in his eyes because I know it all too well. If we lived a typical life I doubt I would have this bond with my brother. It’s definitely bittersweet. While it sounds so amazing to have a partner to go through all this together, so neither of us has to be alone, I’d never want the situation to be like this. The two of us have had to be strong for each other, and that’s what’s made me remain positive — because I know I have to do it for him. That moment on the beach that summer night I knew we would be OK. I knew we would make it through the worst. We would survive and live life to the fullest all because we had each other as our source of strength. It was definitely a shock to hear this from my youngest brother, but it just further validated the reason why he is my best friend and my superhero. A version of this story also appeared on It’s Not as Easy as You Think. The Mighty wants to read more stories about siblings , whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post to community@themighty.com. 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. The Mighty finds strength, joy and beauty in people facing disease and disability. Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

What I Do When People Stare at My Feeding Tube

For many of us living with a chronic illness, you learn quickly that people stare. And trust me — th ey stare a lot. They stare at the mall, at school and at church. They stare when I’m wearing a bikini at the beach or at the pool. Heck, people even stare at the lines sticking out of my shirt or when my feeding tube pump beeps. I don’t mind the stares at all, but sometimes it’s hard to tell if someone’s being mean or if they’re just curious. While I find most people are just curious, that doesn’t make it any less annoying. Even though they’re curious, they’re still afraid to ask. And if they really cared, they’d ask. Of course I’ve dealt with some rude people, or people who don’t understand. Once someone asked if my tube was a pair of headphones. Yes, that actually happened. They help me hear my stomach juices, obviously. (You can actually plug headphones into your feeding tube, I’ve tried.) I’ve also noticed that kids stare less than adults. Kids take one look, ignore it or ask about it, and then move on. Many adults, on the other hand, look sad or disgusted. I could probably teach those people a thing or two about acceptance — it’s so twisted they’re appalled by anything different. Other people in my situation tell me they’re embarrassed to show their tubes. They’re scared they’ll be judged and don’t want to draw attention to themselves. They don’t want people to know that tubes keep them alive. My personal motto: Never be ashamed of something keeping you alive! That’s what I’ve stuck with, and it helps me talk openly about my illness. Being the person I am, I love raising awareness about my disease. While I don’t want to publicize that I’m sick, when people ask, I tell them. My advice is to keep it simple. They usually just want to know the basics — not everyone has the brain of a doctor or a nurse. I explain that because my stomach is broken, I can’t eat like everyone else. The tubes help me eat. Also, while i t’s hard for those of us who are sick to talk about our illnesses, we have to remember that other people probably feel as uncomfortable as we do. Never be ashamed of something keeping you alive. I believe that’s the way God made you, and if it’s fine with Him, then it better be OK with everybody else. I always say: Let people stare, I don’t care! It’s my life, not theirs, and they can row a boat and get over it. (Isn’t that the saying?) If you want to ask questions, just be respectful. Most of us don’t care because it means you want to know more. And a little medical lesson never hurt anybody. A version of this post originally appeared on It’s Not as Easy as You Think. Want to celebrate the human spirit? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

How My Brother With Mitochondrial Disease Inspires Me

I believe in superheroes. My brother wears his superhero cape and mask around the hospital to show his strength and his courage as he fights this battle against Mitochondrial Disease. It’s a disease with no treatment, no surgery, no magic pill and no cure. My brother, Tyler, and I both have several rare, incurable diseases and this has brought a bond between us like no other. I was 12 on April 16th, 2011 when Tyler had a seizure in my arms. I remember screaming for help, thinking it was my fault, collapsing on the ground crying with my younger brother, not knowing what was happening or if he would survive the night. Tyler turned blue within a matter of minutes and ended up having two seizures that night. Soon after, he was diagnosed with Mitochondrial Disease and he is still showing the world what amazing things he can accomplish despite the obstacles in his way. Since then, Tyler has cheated death twice (for a total five of times), which is way too high for an 8-year-old boy! I will admit the facts and statistics scare me because I know I will probably lose my best friend, but I pray every day a miracle treatment or cure will come. I just hope it comes and saves my superhero before it’s too late. Over the weekend, Tyler and I were talking while I was pushing IV medication through his Arteriovenous fistula and several things he said reminded me of the past. We were just having a normal conversation about something funny and then he said he had something to say. I listened and he broke my heart. I hate it when he says he feels lonely and scared. He told me how thankful he is to have me so he doesn’t feel so lonely because I understand the pain, the tears, the tubes, the wires and the hurt. I started to cry. It’s not fair that an 8-year-old boy says he wants to rip his tubes out because it hurts too much. Sadly, this is his experience with his disease. Through everything that has happened, we are both somehow alive today. I think it is because we have each other. Being sick has made us best friends ever since day one. I am proud to be his sister because he has shown me how to live my life a little differently than most do. Before I finished giving him his medicine, the last thing he told me was this: “But life is just life, you know? Whatever happens, happens.” Superheroes are supposed to sacrifice things in their life for others and that is exactly what Tyler does. Every day Tyler could only care about himself and how much pain he is in. Instead, he puts others, including me, first. It is something we have always done since the beginning. Having two sick kids in our family is hard enough on our parents and siblings. They need a break just as much as we do. Even though Tyler is hurting, he takes the time to worry about others before he worries about himself. Tyler defines what a true hero is: courageous, bold and a fighter. This post originally appeared on Chronically Awesome. The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to end the stigma around disability? Like us on Facebook. And sign up for what we hope will be your favorite thing to read at night.