I don’t know how hard it was for you to approach me on the beach, but I know I have a hard time talking to strangers. But you waltzed up to me with such confidence that nobody would have ever expected a confidence problem with either one of us, especially since I have to carry myself with such an aura of it. You saw me for who I really was — a scared girl who was trying so hard to not let anyone see the fear in her eyes.

I don’t know if that’s why you came up to me or not, but I want to thank you. Living with a chronic illness is no easy feat, and it gets even harder when that illness changes your outer appearance as much as mine has. With clothes on, no one can tell that I’m anything but a “typical” person, but on the beach it’s a whole different story.

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Everyone is exposed on the beach, but I literally have to “let it all hang out.” I have an ileostomy, a G-tube and a J-tube, not something you see every day. I’m used to them — to me they’re normal. But to everyone else, I’m something out of a science fiction movie. But you, you saw me as a person. You didn’t stare at my equipment, you looked me in the eye. And then — you thanked me.

author in bikini showing off her ileostomy, a G-tube and a J-tube,

I’m not sure you could tell, but I was stunned. I’ve had people approach me and call me gross or ask me, “Are you really going in the pool like that?” And when you came up to me, I was preparing for the worst. But what came next still has me in awe. You thanked me for rocking my bikini, told me about how you used to have an ileostomy as well and how you no longer have a large intestine. You told me I was inspiring. That honestly meant the world to me.

When I was packing for that trip, I agonized for hours about what bathing suits to bring. I actually brought every bathing suit I owned and money to buy a new one because I didn’t think I had the right one to hide everything. That morning I made a last minute decision to just wear my bikini as if I didn’t have any extra parts on my belly. I was so nervous. Every teenage girl can have body image issues, and since getting my ostomy, mine have been multiplied by 100. We hadn’t been on the beach long when you approached me, and I was already feeling uncomfortable, thinking all eyes were on my ostomy. But after speaking with you for those few short minutes, all my worries melted away. At that moment, I realized what I look like doesn’t matter, and for the rest of vacation, my only bathing suit issue was that I had severely over packed and probably didn’t need nearly as many as I had brought!

So thank you. Thank you for restoring my faith in the good of people. Thank you for allowing me to feel comfortable in my own skin. And finally, thank you for giving me the confidence to enjoy my vacation to the fullest extent.

Follow this journey on Sara’s Army.

The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


“What’s wrong with you?” he asked, his voice slurred by one too many alcoholic beverages. He stared blatantly at my chest, his eyes attempting to focus on the port implanted beneath my right collarbone. A bandage covered the device in order to keep the needle, protruding from the port, in a sterile field. 

“I can’t eat,” I patiently replied.

“What?! That’s horrible…” his voice trailed off as he tried to comprehend what I had told him.

A little while later he stumbled away, murmuring to himself and shaking his head as he tried to comprehend what I had just told him. I knew that his drunken state had broken down the walls that kept most people from asking the same question that he had asked. Yet, even though they never asked what was wrong, their eyes would tell a different story.

Strangers’ eyes. Always piercing and questioning. Their stares cutting deep into my soul. Normal people who wonder why I have tubes leading out from under my clothes, which connect to a small black backpack, hanging lopsidedly over one shoulder. They think they’re doing the right thing by staying silent, but what they don’t realize is that I can feel their stares from a mile away.

When I go to a cash register to check out, I watch as the cashier’s eyes stayed glued to my chest instead of my face as I try to talk to them. I try to ignore the stares. I try to pretend that they aren’t staring openly at me. I try to act normal, but it’s hard. Sometimes I just want to blurt out, “It’s called a port and it’s keeping me alive. If you have any questions, please ask them, but please just stop staring at me and acting weird or embarrassed about it. My port and my tubes are part of who I am. They aren’t bad. They aren’t something to be afraid of or feel uncomfortable about, but your stares make me feel uncomfortable.”

It’s absolutely normal to be curious about a strange device, scar or deformity on someone. It’s OK to look and wonder, but when you stare and don’t stop staring, that’s when you can start to hurt the person you’re staring at. It takes courage to go out in public when you know people will stare, and even though you know they’ll stare, bearing the brunt of those stares is never easy. You just wish people would either ask you politely what’s going on, or that they’ll look and then focus on something else.

People like me, who have something on their body that’s different, understand other people will stare. I’ve caught myself staring when I see something unusual on someone, but the trick to staring is to take a look, but then let your eyes travel to something else. And if you approach the person and talk to them, talk to them, not to their deformity or medical device. They can see when you’re not meeting their eyes and it causes discomfort and embarrassment for the other person. Yes, we know you’ll look, we know you’ll probably stare, but if you’re going to keep staring, then muster the guts to actually ask us what’s wrong instead of treating us differently or like we’re cursed.

We are human, just like you. That’s how we want to be treated. So the next time you find yourself staring at someone, do this: Move your eyes away from what’s different about them, meet their eyes and give them a smile. A smile can help encourage them and show them at least one person had the courage to treat them like a normal person instead of just staring openly at whatever is different with them.

The Mighty is asking the following: “Staring” is a topic that comes up so much in our community. Tell us about one unforgettable “staring” experience you or someone you love had that’s related to disability, disease or illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

My husband and I try to shelter our daughters from my chronic disease. We try not to talk about my health problems around our girls. But they know. They see it. They see me take a bite of a cracker and then become violently ill.  They notice when I’m so sick I sleep all day, unable to get out of bed.  They see me constantly on the phone with doctors, having my nurse come to the house to care for me and being driven from appointment to appointment. They know how to help me hook up my port to fluids and total parenteral nutrition (TPN). They each have their special jobs they can do.

It breaks our heart to know that they have so much stress and worry at such a young age. Questions my husband and I have fielded are, “Is Mommy going to heaven soon?” “Will Mommy be able to watch me at my dance recital?” “Why won’t Mommy wake up?” “When is Mommy coming home from the hospital?” “Why are Mommy and Daddy always gone? Why do we always have to sleep at Grandma and Grandpa’s house?”

When it comes to going out to dinner at a restaurant, my husband and I still feel awkward when it’s time to order. What do I say when the server asks me what I’d like to order? When I say, “Nothing for me,” do I explain that I can’t eat, or do I just leave it alone? Will the server be mad I’m taking up a table but not buying anything?

Well, in this certain instance, I said I wouldn’t like to order anything.  The waitress said she’d have to talk to her manager, because since the restaurant had entertainment, he would probably make me pay something.

Finally, the manager came over and said he would have to charge me for a kid’s meal. I calmly responded, “But, I’m not eating anything. I’m here to be with my kids.” The manager then replied, “Well, eating or not eating is a choice. I’m charging you for a kid’s meal.” My 4-year-old daughter suddenly turned to the manager and said, “I don’t think you understand. My mom has gastroparesis. She can’t eat or drink anything because it makes her sick. She has a port right there under her shirt and TPN goes in it. TPN is her food. If she eats she could have to go to the hospital again. I really don’t want that to happen.”

My husband and I looked at each other with wide eyes as our jaws dropped. How did she know all of this? Did our sweet 4-year-old just leave a grown man speechless?

Our daughter looked so proud of herself that day. We realized she just wanted to be able to help me in any way she could. And guess what? She did! I didn’t get charged for a kid’s meal, and the manager never came back to our table or even made eye contact with us.

family photo

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

My doctor sat at his desk facing his computer as he read through my chart and got updated on the various specialists I’d seen and the tests I’d had done since my last appointment with him.

He turned around and said, “So pretty much you’ve become a professional patient.”

It’s true. I’ve seen several new specialists lately and am waiting to see a few more. This is a good thing because it means that after years of trying to politely convince my doctors that there are other things going on, I’m finally getting somewhere. I don’t yet know exactly where that somewhere is, but I’m happy to be on my way all the same and I’m thankful for the understanding and committed doctors who are helping me get there.

But it’s still hard. I’m tired of waiting months for appointments to come up. I’m tired of playing trial and error with new medications. I’m tired of just not feeling well day in and day out. I expressed this frustration to my doctor, although I knew there was nothing he could do about it. What he told me, however, actually did help.

He said, “I know. But you’re doing a good job, and I think you’re handling everything really well.”

It was the perfect thing to say. There was no pressure on me to put on a brave face. There was no expectation that I should be upbeat and optimistic all the time. There was no dismissal with false hope or empty consolation.

Catherine Richardson giving a thumbs up

Instead, there was awareness of the “chronic” part of my chronic illness. There was permission to be realistic and an understanding that I was weary. But it was also good to know that even though it felt at times as if I were stuck in place, weighted down by my illness, I was actually still moving forward.

And because of all that, I also felt encouraged. I was doing a good job. I could keep doing that.

It was exactly what I needed to hear, and I can’t help but think that maybe you need to hear it, too.

So I want to tell you that you’re doing a good job.

Maybe, like me, you’re facing a chronic illness or disability. When you feel like you’re running around in circles searching for a diagnosis, you’re advocating for yourself. When you struggle through difficult treatments and procedures, you’re giving yourself a chance at a better future. And when you find yourself facing a feeding tube, a wheelchair or any other medical device, you’re working within your limitations to be as well as possible and live a life as full as possible. You’re doing a good job.

Maybe you love for and care for someone with a chronic illness or disability. When you’re breaking down the walls of your comfort zone in order to learn to care for your loved one, you’re working to accept your new normal. When you’re putting in hours of planning and preparation to help your loved one carry on with life as normally as possible, you’re proving that a challenging life can still be a meaningful one. When you set aside your exhaustion, pain and fear to help your loved one through those feelings of their own, you’re teaching them how to be resilient. You’re doing a good job.

We’ve all got something. It doesn’t even have to be illness or disability. We all have things in our lives that are hard.

Sometimes we get defeated. Sometimes we’re angry at our circumstances and feel sorry for ourselves. Sometimes we compare ourselves to others and get jealous of those who appear to have it easier. And that’s all OK, because other times our spirits triumph. Other times, we choose to laugh instead of cry and choose to be grateful for what we do have instead of feeling bitter about what we’ve lost. Other times, we reach out and take everything we’ve learned through our struggles to help someone else face their own.

We don’t have it all together all the time. We’re not supposed to. But we do what we can. We do our best.

So don’t be afraid to give yourself some credit and acknowledge your own strength. Don’t be afraid to give yourself the affirmation that you need. Whether you’re thriving or simply just surviving, you’re doing your best.

And you’re doing a good job.

Catherine Richardson holding sign that says you're doing a good job

Read more from this author on her blog, Finding My Miracle.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

Being chronically ill in college comes with many obstacles. One of the hardest ones is avoiding “normal people” illness. Being an education major makes this even harder. I spend lots of time in elementary schools. It’s safe to say there’s always something going around. On top of that, no one ever wants to miss a class. My classmates come in sick all the time. One of our professor once came in and told us she had a low grade fever.

For me, this is scary. Let me give you a little history of what’s happened to me when I’ve gotten “normal people” sick while being chronically ill. In high school, I had a small cold that was only bad for a couple days but then triggered a joint flare, forcing me to miss multiple days of school. I ended up needing a completely new medicine regiment. The infection also backtracked my hip surgery recovery. A year ago, when I had a simple viral infection, my gastroparesis was triggered; now, I have a feeding tube. Without knowing this history, most of my peers think I’m crazy for never leaving my apartment without hand sanitizer and carrying around a travel-sized Lysol spray.

Most college kids don’t think twice about coming to class sick and don’t realize how it may affect those around them. So last night when I received a text from my friend starting with her saying she had a low grade fever, I assumed she probably was asking me to take notes for her or come over after class to help her catch up. When I woke up this morning and read the whole text with fresh eyes, I found out she was letting me know because while she couldn’t miss class, she wanted to warn me to stay away from her (we usually sit next to each other). She didn’t want me to get sick.

I don’t think she realized how much I appreciated that text. Not only did I avoid a bug but I also saw that she really understood my challenges.

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 [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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My teenage daughter has lived with chronic pain and illness for more than five years. She used to be a completely carefree child with a little illness here and there but a lot of injuries. At age 10, on one fateful day, one of these injuries became constant pain. Soon after, that constant pain trickled into more and more symptoms. It wasn’t long before chronic invisible pain attempted to shatter my little girl. Through all of the symptoms and scary times, a girl I’ve named my “Smiling Warrior” emerged. She lives in a land I’ve named “Abnormal Normalcy.” She’s my hero.

Many days, I wish I could make the world understand the concept of “invisible.”

 “She looks so good.”

 “I thought she was doing better.”

 “Won’t she outgrow this one day?”

 “Have you ever tried _______ [insert juice, new supplement, shake, etc.]?”

 “Oh, my grandma has that problem.”

I share.

I educate.

I advocate.

Does anyone even here me?

Sometimes I wonder.

My mind is so divided. One part of me wants to grab (and shake) each and every person who just can’t seem to get it. Another part of me wants to not even care what anyone thinks they know.

I’m beyond aware this is all difficult to comprehend. It’s a puzzle beyond challenging. It often makes no sense at all. And silly me expects my words to be listened to and even taken as truth.

This is my child’s reality, whether you choose to understand it or not. I wish we didn’t have to attempt to understand the absolutely bizarre, but we do, because it’s our daughter’s life. The research never ends. The support, education and advocacy which allow her to live this life has become my life.

I say, “She’s hanging in there.” or “It’s ups and downs.” We just keep on going.

Fortunately, here and there we see a few glimpses of better — sometimes hours, sometimes just moments, but that better never means freedom from her dysfunctional body. That bettercomes with a high price. Decisions on pacing and balance have replaced the impulsiveness and carefree nature of youth. I’m grateful for what my Smiling Warrior has in life but also stung by what she’s given up.

There might be times she looks good. (She’s mastered presentation of the shiny facade for the public.)

There may be times that she is doing a little better. (Because she gave up trying to do it all or even half of it.)

She’s not going to outgrow this. (But she’s learning every day how to grow with this.)

We’ve tried so many things. (But longterm solutions aren’t found in gimmicks.)

And please don’t compare her symptoms to your aging problems because she is a young girl and not an old woman (although she often says she feels trapped in an old body).

So, onward in the land of Abnormal Normalcy, where the only consistency is the inconsistency.


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