What I Do When People Stare at My Feeding Tube

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For many of us living with a chronic illness, you learn quickly that people stare. And trust me — they 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 it’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.  

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6 Phrases People Facing Serious Illnesses Would Rather Hear You Say

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When living with a serious illness, you become accustomed to hearing phrases from the uninformed bystander — or even your own family. While these phrases may come with good intent, many are actually quite distasteful for the circumstances we’re facing. Phrases like “Everything will be OK,” “I know what you’re going through,” and “God only gives us what we can handle,” can be somewhat offensive or even demean what we’re facing. Here’s a compilation of appropriate affirmations someone facing a serious illness would rather hear you say.

1. “I Googled your illness.”

A frequent issue we run into is the lack of understanding surrounding our diseases, even by close family and friends. But simply stating you took the time to research an ailment confirms you truly care about your loved one’s condition. Taking this small glimpse into the symptoms they may be experiencing will help you understand what they endure daily. This easy task will also reveal a person’s likely prognosis, which in turn will help the bystander rule out inappropriate remarks such as, “Get well soon” if in fact the patient will not.

2. “I have no idea what you are going through.”

It’s human nature to attempt to relate to those around you; however, when someone is experiencing a trauma you’ve never encountered, expressing, “I know what you’re going through” is not appropriate. The reality is, you have no idea what it is like to slowly watch your body deteriorate unless you’re personally experiencing it. A person with a serious illness often faces unimaginable pain and mental turmoil as a consequence of his or her disease — this is not something you can understand because you’ve experienced, say, the stomach flu.

3. “Sometimes it does feel like God gives us more than we can handle.”

The truth is, whether you’re religious or not, expressing to someone that their situation will never be more than they can handle is distressing. Illness seizes your life and changes everything you knew about yourself. On a daily basis it can feel as though the world is collapsing around you; it most certainly feels at times like it’s more than we can handle. While it’s a nice sentiment to point out that we’re tenacious individuals who can handle what life throws at us, it’s more comforting to us when you acknowledge the times we feel overwhelmed and lost.

4. “I approve of whatever treatment option you choose for yourself.”

Illness are tough enough without input on how we choose to handle them. While many individuals mean well with their herbal remedies, supplements or special diet plans, we must decide for ourselves how to handle our situations. If we decide to use Western medicine to treat our illness, please respect that choice and recognize that we know our bodies best. Attempting to persuade us that we’ve made a misinformed choice or taken the easy way out doesn’t generate a positive feeling for us. Remember to consider that our illnesses are complex, and while a diet may have worked for your issues, it may not help ours.

5. “I know you look good, but I accept that you’re feeling beyond what I can see.”

The most common phrase I receive is, “But you look so good!” But many of us face what are known as “invisible illnesses.” This means that while we may look healthy on the outside, our bodies are raging war just beneath the surface. Acknowledging that we look good seems like a positive affirmation, but it can also belittle what we’re facing, especially when “You must be feeling better” follows. Disease is like an iceberg; you can truly only see the tip. What’s below the surface is extraordinarily large. Please recognize that while we look like healthy individuals, there may be much hardship beyond what you observe.

6. “I recognize that everything might not turn out OK.”

There’s a significant difference between being pessimistic and accepting the reality of one’s situation. All of us living with an illness have had to accept our prognosis. For me, living in a sugarcoated bliss doesn’t benefit me in the long run. This attitude doesn’t mean we’re pessimistic. It means we’re realistically facing our trials. When someone in our life is unrealistically positive, speaking of cures to disease which have none, it can feel quite degrading. In a way, this frame of mind expresses that our trial is not as serious as we believed, that we’re making up the severity of our situation. Many diseases do lead to death, and while conveying to someone, “Everything will be OK” is a lovely thought, truth is, it might not turn out that way. Please remind yourself to accept the reality of someone’s illness. This affirmation will not only assist that person’s confidence but will also create a more comforting environment of acceptance for the bystanders if things do take a turn for the worst.

This post originally appeared on The Day in the Life of a Tube Fed Wife.

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Why People With Invisible Illnesses Don't Like Hearing That We Look Good

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Editor’s note: This post has been updated since its original version at the request of the writer. 

It’s not a secret that people with chronic and invisible illnesses get really tired of hearing they look good. You might think this irritation is irrational, and that’s OK, because six years ago I probably would have felt the same way. I mean really, who doesn’t like to get a compliment?

But it’s not the spontaneous and genuine compliments that get to me. It’s when someone tells me I look good after hearing I’m having a really rough time of it, as if looking good is going to make up for the fact that my body is falling apart. It’s when I’m honest about my health, only to be met with a brief but awkward silence followed by a platitude about my appearance.

Well, you look good anyway… but you don’t look sick… and various other forms of that sentiment are on every “things not to say to someone with a chronic illness” list. So it’s not a secret that we don’t like to hear it. The secret is why. I can’t speak for everyone, but I also know I’m not alone in this.

The simple answer is that just because we look good doesn’t mean we feel good. When we feel awful and someone tells us we look good it makes us feel like our struggle is
being minimized. It’s not that we’re mad people think we look good, it’s that we’re worried people won’t understand we are still sick. If someone thinks we look good we assume they think we feel good, too. So we feel invalidated.

We have a love-hate relationship with the fact that our illnesses are invisible. It’s nice to be able to blend in, and it’s nice to be able to be selective about who we share it with, but sometimes it makes it harder to accept that things are different. When we look in the mirror we see the same person we always were. We see these bodies that used to dance, run, work, sing, cook, whatever, and then it’s a letdown when we remember we can’t do those things anymore. So we feel disappointed.

Not only can we not do the things we want to do, but our bodies don’t even do all of the everyday things they are supposed to do. Digesting? My body doesn’t really do that. Standing up? Yeah, not a fan of that, either. It seems like our bodies are always letting us down. So we feel betrayed.

All around us we see all these people doing these everyday things without thinking twice while we’re just struggling to stay on our feet (figuratively, yes, but often very literally, too!). 

Because we didn’t understand that struggle ourselves until our own illnesses hit, we know unless other people are touched by illness they can’t fully understand that while we look fine on the outside, on the inside we are falling apart at the seams. So we feel isolated.

And since we look fine it’s also hard for other people to comprehend our limitations. Even if they do comprehend them, not being able to see those limitations makes it easy for other people to forget they exist. We often have to provide multiple explanations or reminders, and then we worry about being a downer and holding other people back. So we feel guilty.

Sometimes looking good or healthy can even be an obstacle to getting proper treatment. Most of us have worried at one point or another that we don’t look sick enough to be taken seriously. So we feel defensive. All of us have had doctors question our symptoms based on our appearance and tell us our problems are all in our heads. All of us have been treated as hypochondriacs, and after going weeks, months or even years without answers we start to wonder ourselves if we’re just going crazy. So we feel doubtful, too.

And here’s one of the biggest things we don’t talk about: We feel insecure.

When we become sick our body is no longer entirely our own. For one, we have a lot of doctors wanting to know about a lot of things we’re not always comfortable talking  about. And two, we lose a lot of control over how we look. We feel like we’re too skinny because we haven’t been able to eat lately. We’re unhappy with how much weight we’ve gained since starting a new medication. We don’t like how puffy our face is due to fluid retention. We’re frustrated by the acne that’s showed up because our hormones are out of balance. We’re exasperated by the dark circles under our eyes that won’t go away no matter how much we seem to sleep. We are acutely aware of all the ways our illnesses and treatments have altered our appearance, and when someone tells us we look good it’s easy to start thinking about all the ways in which we don’t. It’s hard to feel comfortable in our own skin when it doesn’t feel like our own skin. So we feel self-conscious.

We know when you tell us we look good it’s because you’re trying to be supportive, or you don’t know what to say but want to be encouraging, or maybe you really do think we look good and you want to make us feel good about ourselves. And we know it seems silly for us to resent a compliment so much.

But it’s more than just irrational irritation. Invalidation, disappointment, betrayal, isolation, guilt, defensiveness, doubt and insecurity. All of that is tied up in our appearance.

So thank you for trying to be supportive, but if we open up to you about how we feel please don’t default to how we look. Listen and try to understand. Acknowledge the things you can’t see, the inside stuff. The resilience, the patience, the determination and the hope.

Encourage us from the inside out, because at the end of the day, appearance aside, that is what keeps us going.

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My 12 Hopes for the Man Who Marries My Daughter With Chronic Illness

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To My Future Son-in-Law,

As I write this, you are likely tucked safely into your bed, exhausted and eagerly anticipating your day tomorrow. You probably had a full day of learning and exploring, in the way little boys do. And while you most definitely do not have marriage on your mind tonight, I most definitely do.

Someday, sweet boy, you will marry my daughter. You should know that she is strong and feisty and loves fiercely. She is brutally honest, beautifully brave and endlessly kind. She is a fighter and a protector. She is my hero.

Shortly after her birth, she found her way back quite literally from the edge of death.

Every single day since then and for every day ahead of her, she will have a life-threatening chronic illness. Someday you will stand next to her and be as overwhelmed by her grace and strength as her dad and I am and will always be. She will rely on you to be strong in the moments when she is not and to love her, not in spite of her illness, but because of how she embraces life.

I love each one of my children and worry for their futures and the choices they will make for themselves. It’s hard to picture what life will look like in 15 years or 20, but I am very happy you will be in that picture for my baby girl. Part of me cannot wait to meet you and see that phase of life begin for my girl, but an even bigger part of me wants time to slow down so I can relish her childhood. I’m sure your parents feel the same.

There are many things I want for my girl and many things I pray that she will experience in her lifetime. There are lessons I want her to learn so she can be shaped into the woman and wife you’ll need her to be, but there are also things and lessons I want for you as you grow and become the man and husband she’ll need you to be. I will need you to be that man for her not only because she is my baby girl and deserves the best, but because her medical needs are very real, very challenging and very rare.

But before that, future son-in-law, I have a few hopes for your own journey along the way.

1. On this night, I hope you were tucked in by someone who loves you, worries about you and prays over you. I hope you pray too.

2. In the morning, you might be off to preschool or kindergarten, or you might be home-schooled. None of that matters. I only hope that you are kind to your peers, both in school and out. I pray that you feel the sting of mistreatment by those same peers, so you will know what it feels like and be spurred to befriend others who might also be stung.

3. I hope that you fail. Failure will teach you perseverance, and you will need that not only in your marriage, but in life. Perseverance will teach you to get up and try again.

4. I hope you respect your elders and hold doors for ladies. Chivalry is not dead, and respect will carry you far in life. Show respect and you will earn respect.

5. I hope you question everything. Someday, you might need to question the treatment plan doctors prescribe for my daughter. She will count on you to act on her behalf when she is not able. Be her advocate.

6. I hope you are strong. You will need to be when she is sick, and there isn’t a single thing in the world you can do to make her physically feel better. Your strength and love are what she will lean on in those times.

7. I hope you are considerate and put others first. Many people label my daughter as “special needs” due to the rarity of her condition and its life-threatening implications. My prayer is that you will simply find her special and rare.

8. I hope that you are never afraid to ask for help. From your parents, your teachers, your elders and someday, from me.

9. I hope that you love to build. Spend hours building and rebuilding whatever your imagination conjures up. Be patient when you don’t get it right the first time. You’ll need that patience when you marry my daughter, who is stubborn and headstrong, and never hesitates to speak her mind.

10. I hope that you hug your parents and siblings openly. My daughter is highly affectionate and will need your reassurance when facing yet another blood draw or panel of tests.

11. I pray that you have faith as it will carry you through dark days and nights when uncertainty looms large.

12. And finally, I hope you will recognize that while my daughter does have a medical condition that needs to be managed, she is so very much more than her diagnosis. You will know this when you see her. Her personality is so bright, and she is so loving that it blinds people to everything else. You’ll see.

I love you already,

Mom

(Your future mother-in-law)

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7 Things I Want Teens Diagnosed With a Chronic Illness to Know

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To the teenager just diagnosed with chronic illness,

Helpless, hopeless, lost. These are words that could likely describe how you feel right now. I understand completely and I wish I could reach through my computer screen and give you the biggest hug right now. Chronic illness is scary and not easy by any means. While I’m still trying to figure a lot of this out myself, I came up with a few things I’ve come to realize through my journey so far.

1. As time continues, the shock of the diagnosis will fade, but the pain might remain.

This is all part of the process, and accepting this was my new “normal” was hard at first but then made everything somewhat easier. The sooner reality sets in, the easier it gets.

2. I know you probably don’t understand any of this right now and your head is spinning; that’s OK.

Soon you will become a doctor and pharmacist without a diploma and know about your disease better than your doctors. Understanding what you have is good, but remember not to Google it too much, otherwise you will likely convince yourself that you’re going to die in 10 minutes. Knowledge is good, but don’t let your diagnosis dictate you life. You are so much more than screwed up antibodies or a non-functioning organ. You are a human being. You are not your tough experiences; you are so much more than that.

3. Remember that you are not obligated to do everything a healthy person does.

Sometimes you will have to sit out or take a nap in the middle of the day. This is OK. I know it’s hard to watch everyone have fun while you have to wait on the sidelines, but your time will come. Being a teenager, you’ll want to push yourself, but learn to be patient and understand your limits. You are allowed to have bad days and cancel plans. You can’t help it if your health makes it too hard, and you shouldn’t apologize for that. If all you can do today is walk to the bathroom and back to bed, then throw yourself a party in bed because at least you got out of bed, you little warrior, you! Remember this: you’re still just as strong on the bad days as you are on the good. 

4. There are going to be many byproducts of your chronic illness that feel overwhelming.

I’m talking about rude doctors, hours of scans, life-threatening treatment, chronic pain and don’t even get me started on the depression and anxiety that can come with it. You can get through all of this.

5. Not many people will understand what you’re going through right now.

In their world, teenagers can’t get life-threatening diseases and chronic pain, so you’ll probably get a few rude comments that make you angry and cry. It’s OK to be hurt, but remember they don’t understand. I don’t even understand it sometimes!

6. Others might often say you’re an “inspiration” and “strong for such a young age.” This seems sweet, but it also might make you feel like you always have to be strong.

Take it from someone who’s been there: trying to fake a smile all the time to make other people feel more comfortable will only make you feel worse. It’s OK to show weakness or cry. It’s OK to not be an “inspiration.” You’re not obligated to be anything but yourself. It’s OK not to be OK. As long as you don’t stay in a dark place for too long, then by all means cry and get angry (as long as you don’t hurt yourself or those around you), then get back up.

7. You are never as alone as you think you are.

Believe it or not, there are many other teens going through the same things you are. Remember this: you’re never as broken as you think you are and you’re always stronger than you think. I know how scary the future seems, but try not to be afraid; you can learn to enjoy the ride.

Love,

Another chronically ill teen

meredith arnold the mighty

A version of this post originally appeared on Smiling Amidst Storms.

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4 Parenting Rules We Broke to Take Care of Our Son

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My almost 4-year-old son, Branko, has a very annoying and sometimes scary chronic illness. As a result, we have had numerous hospital stays, ranging anywhere between two and 24 days.

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When he was first diagnosed, I was a new mom and already overwhelmed by the newsletters, the mommy group chats and all the parenting advice from all the others who had done it flawlessly before me. I had to sift through multiple expert opinions, picking out the ones that might possibly be applicable to someone in Branko’s state of health.

Branko is kind of kicking this genetic disease’s butt right now. People often say, “I just don’t know how you do it!” To be perfectly honest, I don’t know how we do it, either. Here are a handful of the seven thousand “regular” rules we’ve broken, just in case you are a parent who needs to make yourself feel a bit better right now.

The Experts Say: No screen time for the first two years.

Our reality: We birthed a YouTube addict.

Branko has unlimited screen time when he’s in the hospital. And it’s not just the iPad. The TV usually needs to be on as well. Not too long ago, he had a slight addiction to Kinder Egg “unwrapping” videos on YouTube, the ones that feature a pair of hands unwrapping, cracking open, and then playing with the toy inside each egg. He would watch these over and over and over, eyes glazed and mouth slightly ajar, ready to shout “again!” once the video ended. If we were too slow, he would cry. Then I would cry.

Right now we cannot even say the words “you” and “tube” in our home, in any combination or context. I once said “yoo hoo” as in, “look over here!” I quickly noticed his excitement and immediately confirmed YouTube doesn’t work anymore. They deleted it from the internet, Branko, because of all the iPads being flung out of moving vehicles.

The Experts say: Four servings of fruits and vegetables each day.

Our reality: Chocolate donut marathons.

For exactly 11 days, while in the hospital, he ate only chocolate donuts (Timbits, actually) for breakfast, lunch and dinner. We gave him loads of other options. His respirologist would laugh and say, “At least he’s getting some calories!”

No, impossibly-young-and-well-rested-doctor, you don’t have to stare at his chocolate-stained teeth and his maniacal grin while he holds both an iPad and a cellphone, watching the creepy “Superbabies” episode of Dora The Explorer over and over and over on the TV. You didn’t have a panic attack when the Tim Horton’s downstairs ran out of chocolate donuts, which of course would only happen in our hospital, during this particular hospital stay.

The Experts Say: Maintain a consistent bedtime routine.

Our reality: Bedtime shmedtime.

Kids are supposed to have schedules, right? They apparently thrive on consistency. Well, sorry, but we have zero consistency when Branko is sick. We are constantly being interrupted by these horrible monsters with stethoscopes and needles, who go from room to room in an effort to traumatize as many people as possible per hour. They never come at the same time two days in a row. And it’s never the same person two days in a row. And why are vitals taken every three hours today when they were every one hour yesterday? And why do physiotherapists only enter the room at the exact moment Branko’s eyes close for a nap?

Why? Why? WHY?

Putting a child to bed in the hospital? Need some useful tips? Sorry, I got nothing. It’s terrible. It always feels like it’s the same time of day, so when it is, in fact, dark outside and you share this with your child, don’t be surprised if they laugh at you for a minimum of three minutes. Don’t be surprised if you let them watch “Jurassic Park” until 11:30 pm without even fast-forwarding all the parts with the British dude who’s the master of the Velociraptors (or so he thinks, right?).

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The Experts Say: Make bath time Fun!

Our reality: He has fake baths (so that people don’t judge us).

I’ll admit, I am a little hard on people when I see a dirty, typically-developing child walking around with his fist up his nose. Sorry. My first thought is “gross.”

My second thought is, “My son never looked as awful as your kid and he’s had six casts in two years.” That’s a total of 26 weeks where we didn’t give him a proper bath. Our trick? Just fake it. We wipe him down whenever we see actual gunk on his body. And we usually do it in front of a nurse to emphasize how we are truly great parents.

There is no way to make the process of cleaning a sick child fun. I’m sure there is a logical reason behind it, but the last thing Branko wants, ever, is water touching him. He hates having anything removed from his body once it’s stuck on there. I am quite positive he has an ECG sticker somewhere on his chest from eight months ago.

We sometimes play a game where I smell his feet and pretend to pass out. He loves it! It still gets him every time. The thing is, I have sometimes felt like I was going to pass out. There is nothing like stinky-little-boy smell combined with that six to 12 weeks in a cast smell.

Even though he smells awful he at least looks clean. And appearances are what really matter, right? I realize that I shouldn’t be too hard on myself. I get it. These rules are the “best case scenario” when parenting. I absolutely realize that children in the hospital need to be made comfortable, and if that means Kinder Eggs, Jurassic Park, and stinkiness for short periods of time, then so be it.

As I mentioned, Branko is slowly getting better. He hasn’t been hospitalized in about eight months, which is a world record for him. We are now in the process of trying to establish a consistent routine, which includes three actual non-chocolate based meals every day. So far, it’s going really well, except for the fact that I have to bribe him with one hour of TV, two hours of iPad, and sometimes, a five-dollar bill.

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I have found the whole thing quite difficult. I’m not used to being stern and consistent with him, especially when my go-to parenting mantra used to be, “just do whatever.”

To all the parents out there who don’t have chronically ill kids — I just don’t know how you do it!

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? 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.

 A version of this post originally appeared on Baby Branko.

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