Kaitlyn Tincher

@kaittinch | contributor
Kaitlyn Tincher

Response to People Who Think You Can't Be ‘That Sick’ All the Time

I want you to remember the last time you were sick. It might have been the flu, a common cold, etc… You might have had some warning signs, signs of your sickness before it hit you with a vengeance. You felt miserable, right? Had to call off work, and cancel any of the next several day’s plans and activities. You laid low, rested and took it easy. The symptoms and pain that seemed to take control of your body made you nothing short of miserable. Probably making you feel as if you had just gotten run over by a semi-truck. Now imagine that you’re still sick. Imagine that you never bounced back from that sickness. You’ve spent every day for the past several months, or the past several years, feeling the same way you did when you were last sick. Can’t imagine it, can you? You think to yourself, that’s no way to live life. You can’t be that sick or that miserable all the time. But you can. I can. I do. I spend every waking moment being chronically ill. I spend every waking moment with pain. I spend every waking moment fighting against the raging wars inside my body. Every morning when I wake up, I want to go back to bed. (Even when I haven’t left it yet.) I want to go back to sleep, dreaming of waking up healthy. I don’t want to wake up into sickness. That’s a nightmare. I’m supposed to wake up from nightmares, not into them. So while you bounced back from your illness, while you recovered from being sick… just remember, I didn’t, I haven’t and I never will. Do me a favor and try to take it a little easy on me. Remind yourself, I may look like you, but we’re two uniquely different individuals. Just because you can’t see the sickness taking over my body doesn’t mean it’s not there. Just because you see me in my wheelchair doesn’t mean I’m an “irresponsible teenager just messing around.” Just because you see me taking pills doesn’t give you the right to judge me or make assumptions. When you see me limping, walking extremely slow or struggling to lift my arm above my head, it doesn’t mean I’m lazy. I push through things that would affect others more. I carry on with my everyday struggles that might land someone else in an ER. You see, most people say, “You couldn’t last a mile in my shoes.” I say, you couldn’t last 10 yards in mine. I’m not telling you these things to brag about what I can do or what you can’t do. That’s not my intention at all. What I am trying to do is show you a glimpse into my life. That just because I’m a “young” girl doesn’t give me a “get out of jail free card” for having chronic illnesses. They don’t discriminate, they don’t give any leniency or breaks, and believe me when I say, they don’t care. The trials, struggles, mountains, brokenness, all made me who I am today. The person I am today is incredibly stronger than you’ll ever know. A hospital room

Kaitlyn Tincher

The Things I Never Told You About My Chronic Illness

If you’re reading this, perhaps you know me or someone else who has chronic illness(es). Maybe you wanted some general advice or are reading this just because. I can share with you a few pointers from my personal experience. 1. I know many people are often unsure of what to do, what to say or even how to act around those with different illnesses. But what I don’t think people understand is that is perfectly OK. It’s OK not to have the right things to say all the time. We often can’t think of things to tell ourselves, so it’s understandable that you may not either. What I’ve found to be most true is that the silence a friend can offer you can speak more than a thousand words. Please hear me when I tell you that being by our side through these tough times can speak more to us than any words you could form together. If you’re unsure about something or are genuinely curious, ask us! I love addressing questions and misconceptions to help you better understand me. 2. Treat us the same way you would treat anyone else. We often seek normalcy in the midst of our unusual circumstances. Deep down inside we know we may not do things the way they’re “commonly” done, but it doesn’t necessarily mean we can’t do them at all. For example: don’t avoid inviting me to dinner just because I may not be able to eat much at the restaurant, or pass on inviting me to the mall because my muscles wouldn’t be able to keep up. I would love to get a text message asking to go out to dinner because to me, it’s about the socializing and the company, not the food. Although my muscles would never be able to keep up on their own at a mall, I have a wheelchair to use so I can still go and shop ’til I drop! (Not literally, that might be a bad idea.) 3. Please be lenient and understanding. Our illnesses turn our lives into a giant, fictional, question mark. We never know when we’re going to have a good day or a bad day. We never know when we will end up in the ER, in the hospital or get dragged into an emergency clinic appointment. We may make plans with you but are often forced to cancel them or reschedule. Please try and understand why we do this. It’s not because we don’t want to spend time with you. It’s not because we’re lazy. We would much rather follow through with our plans than battle through the next set of struggles forcing us to cancel our time with you. 4. In the end, you can forget every single thing I said and every piece of advice I have to offer, but if there is one thing you never forget, please let it be this: don’t forget we are still human. We are not our diagnoses. We are so much more. If at times our illnesses become “invisible,” remind yourself that we are not. We have feelings, hopes and dreams. Our days may be filled with appointments, medication regimens, therapies, etc… compared to holding up a job or attending school, but they are just as exhausting and physically taxing. We all struggle every day, even when it doesn’t look like it. We need you in our corner to lend a shoulder to cry on. Despite our illnesses, some days we will need your advice to help us through. Follow this journey on Warrior in Disguise. The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or illness during the holiday season, 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.

Kaitlyn Tincher

She Wasn't Just My Teacher. She Was Someone Who Understood.

In the summer of 2005, my family and I moved into a new house. This meant I was attending a new building for 3rd grade. On my first day of school, I was nervous because I didn’t have any friends. Due to my bilateral hearing loss, I had to carry a “box” with me everywhere I went, that helped me to hear the teacher better. I was nervous because I was different than all the other kids in my class. However, I knew things were going to change when I met my teacher, Mrs. Neth. When I had a meeting with her, she explained to me that her daughter was deaf and she understood, and has seen firsthand, the struggles that come with being hard-of-hearing. I enjoyed going to school because of my teacher. I loved it! Occasionally, I would stay in the classroom during lunchtime and we would eat our lunches together. Even though she was my teacher, she was also my friend. When the school year came to an end, Mrs. Neth retired and moved out of state. We exchanged addresses and we would frequently write letters to each other. She was visiting some family members in town, back in 2010, when she heard about how my health had taken a drastic turn for the worse. She reached out to me and when the time was right, we planned to meet again, face-to-face. Still to this day, we plan to get together once every couple of months. She has “taken me under her wing” ever since I first met her 10 years ago. She has sat in my hospital room and visited me when I was at my worst. She sends me cards and other little pick-me-ups at times when I need it most. Knowing that I get to see her again gives me hope and something to look forward too. She has blessed me with such an amazing friendship, and despite the distance, is always one phone call away. Thank you Linda Neth for being my first friend on that school day in 2005. Thank you for always looking out for me, for considering me as one of your own children. You and your husband are the most selfless people I have ever had the pleasure of meeting. Thank you for always lending your hand when I need one. Thank you for bringing sunshine into my life during an extremely hard time with my health. Thank you for being my friend and walking through my battle by my side. 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 .

Kaitlyn Tincher

To the Woman at the Store Who Reminded Me That I'm 'Different'

I went to our local home improvement store just a few days ago. My family and I were laughing, making jokes and having fun just by making the best out of everything, which is what we do no matter where we are. We were waiting at the checkout line when an employee approached me. She had paused a former conversation with another employee, and walked behind and all the way around a counter, to come stand awkwardly close to me. Then she looked me in the eyes and asked me the words, “How are you doing?” I felt like knew all too well why she was asking me this question. I was in my wheelchair… I looked at the employee and said “Fine,” as I unlocked the brakes and started rolling toward the exit. There were many other customers around me at that time, all of whom she could have approached to ask how they were doing. But she didn’t; she chose me. She didn’t even seem to notice my parents or my sister, who were all standing next to me at that time as well. She didn’t ask how they were doing, just me. This conversation, this woman, made me both mad and sad, intertwined into one. I believed I knew why I was the only person she asked that question to, despite the many others around me at the same time. She saw my disability. She saw my physical limitation. She saw a young woman in a wheelchair. She didn’t see me. She didn’t see me as a person. In the middle of my state of contentment, she reminded me that I’m not like everyone else. She reminded me of my differences. She reminded me that some people look at me and see the wheelchair, not the person inside of it. She reminded me that some people feel sorrow and pity for me. So, to that employee: I’m sorry if my differences attracted your attention. I’m sorry that you felt the need to end your conversation with someone else to move closer to where I was. I’m sorry that you felt the need to ask me how I was doing, as if you expected a long, honest answer that was going to be anything other than “fine.” I apologize if the sight of my wheelchair made you feel as if you had to come talk to me, as if I was anything other than normal. I’m sorry that it took away my happiness in that moment. I’m sorry that it changed my mood that night all because you had one question for me. I’m sorry for the reminders it gave me. I’m sorry that it seemed like you felt pity for me. I understand employees ask customers “How are you doing?” or “Did you find everything okay today?” But, I don’t understand when an employee doesn’t ask all of the other customers around those same questions. I don’t understand why you wouldn’t ask the person who is actually checking out, and not someone who is three people deep in line. Did you expect me to not think anything of it? Well I did. Want to know why? Because I’m still me. I’m still another human who is just like you. I may do things a little different than you, but I’m still me. I notice when people look at me differently. I notice when someone is “overly enthused” to talk to me, as if because I’m in a wheelchair, it means I don’t talk to people much. I still notice the “aww…” that people whisper as I roll by them, as if my being in a wheelchair is a symbol for “feel sorry for me.” So, next time you see someone in a wheelchair, casually continue with everything you were doing. Treat them as if they are just like everyone else, because they are. Don’t remind them of their differences, like you did to me. The Mighty is asking its readers the following: Describe the moment someone changed the way you think about 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. 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 .

Kaitlyn Tincher

There’s a Benefit to Being Teased by Your Siblings When You're Sick

Dear Siblings, You were 6 and 4 years old when I came into this world, but you didn’t know it yet. When you awoke that Sunday morning, Nana and Papa were there instead of Mommy and Daddy. Nana and Papa tried to explain as best as they could to you both that your new baby sister was going to be here a lot earlier than we thought. Once you got to the hospital, Mommy and Daddy had to explain again that you couldn’t see me because I was very sick. At such a young age, you were so confused. You had to spend the next several months with different relatives, different neighbors, everyone but the two people you really wanted, your Mommy and Daddy. I apologize that all of their time and attention went from you two, to me. You both had to adjust to the new sounds of apnea alarms going off, O2 monitors alerting, the frantic rush of our parents running for me, nurses in the home and the spontaneous times we would leave for the hospital and not come home for quite some time. You had to adjust to a new way of life, that your baby sister was a little different. That it seemed like she got all the attention and you didn’t. Over the course of the next several years, everything just seemed to fall into place, like it should have from the beginning. I turned into a seemingly healthy kid and could do just about anything you both could do. We were just another “normal” family. But it happened again… When you were 19 and 17 years old, the whole world changed again. It was another typical day for you both when you got the news that your sister had the ambulance called and was being transported to Critical Care. Though, one thing I am grateful for, is you were both so much older this time around. You understood what was going on. Unlike when I was born, you were too young to understand. But I realize now that it wasn’t just my entire world that changed again. It was yours, too. You were dealing with a lot in your own lives, not to mention me. Graduating from high school, thinking about colleges, having friends, etc… But once again, all the attention went back to me. Mom and Dad spent all their time with me. They went from being with me, to work, back to me. I see now all the times you spent in the waiting rooms. I see now all the time you spent with me at the hospital, instead of hanging out with your friends. I see now that your heart was just as broken as mine when I got another life-threatening diagnosis. I see now everything you had to give up for me. Just know that if you ever felt like your efforts went unknown, they didn’t. I may not express very well my thanks and gratitude to you both enough. But just know I see it now and I’m sorry. Thank you for all those times you picked on me, teased me and tormented me. You were the ones who didn’t make me feel like I was any different than you were, despite the fact that I was. Thank you for inviting me on some of your dates and making me feel like I was the special one. Thank you for inviting me to hang out with your friends like I was part of the group. Thank you for never treating me any different. Thank you for always seeing me and never once, my illnesses. THANK YOU. Thank you for being my siblings. Thank you for being you. This post originally appeared on “Warrior in Disguise.” 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 .