April Barcalow

@april_barcalow | contributor
I'm a wife, mom to three growing kiddos, registered nurse, and freelance writer. For several years my life has been turned upside down by debilitating symptoms. During flare-ups, I use a cane almost daily and a wheelchair some days. I'm working to carve a path through this, writing and finding creative ways to express my own personality in spite of (or maybe because of!) my new limitations. I write about life with chronic illness on my site, www.livablebydesign.online, and about a wide range of topics on my author site, www.aprilbarcalow.com.
April Barcalow

5 Ways My Marriage Is Better Because of Chronic Illness

Most of us are well aware of the ways in which chronic illness or disability has impeded our lives. The list of things we’ve lost is so very long. That is the reality of this journey. But in the midst of the pain and loss, I have noticed that some things are better because of this. I am a different person as a result of my experience with illness, and so is my family. And in many ways, we are stronger for it. Here are five ways my marriage has improved because of chronic illness: 1. We have grown deeper as a couple. I thought we knew each other well, and in many ways we did. But after years of sitting at hospital bedsides, navigating new symptoms, riding the rollercoaster of chasing down diagnoses, adapting to limitations and changes, and carrying each other through the pain and loss and fear, we really know each other now. We’ve had difficult conversations about topics we never would have broached. We’ve whispered about our deepest fears in waiting rooms, or lying together in the dark at night. We’ve held each other when it was all too much, and laughed together in spite of it. Chronic illness has taken us far deeper than we’d gone before, and we’ve discovered more and more of each other with each new layer. 2. We have learned how to care for one another. We’ve navigated a lot together. In addition to the regular stresses of marriage, raising children, and our careers, we’ve had all the ups and downs of my chronic illness journey. And we have had to learn how to help each other through it. We’ve taken turns holding each other as we’ve cried, and we’ve made each other laugh in the midst of the hard times. We have each made space for the other person to rest. He’s picked up the brunt of the work on the home front, and I’ve learned what it means to support and encourage him from my post on the couch. We’ve adapted to my physical limitations to find ways to connect with one another. In so many ways, we are just better at taking care of each other than we ever were before. 3. We’ve learned to laugh in the midst of hard times. I sometimes rely on a wheelchair because of my weakness and fatigue. When I am out in the chair, I often receive comments from strangers about how brilliant my smile is. It always catches me off guard, because in some ways, wheelchair days should be my hardest. But we’ve learned to turn it around. My husband often pops wheelies when he is pushing me, or leans in to make jokes. I find that most of my memories in a wheelchair are memories of laughter. In the same way, we’ve learned to laugh at my physical limitations: the ridiculous ways I flub my words with brain fog, the way that I feel like an elderly woman with my cane, the way I make him do all the heavy lifting around the house. We poke holes in the darkest sides of chronic illness and laugh together, and it carries us both through the challenges and brings us closer. 4. We’ve found new interests and hobbies together. I loved to ride my bike before my illness. When my symptoms made riding impossible, I was devastated. But my husband bought me a picture of a tandem bike and reminded me that there is still a way back to the things we love most. A few years into my illness, we bought our own tandem bike. It’s become a favorite shared pastime. We joke that I do as much work as Kermit the Frog does on his bike (in fact, we call my frequent lack of pedaling “Kermit the Frogging”), but I find it exhilarating to be riding a bike at all again. We ride trails and roadways together, pack picnics in the bike basket, and explore new places. We’ve found a new shared interest that we can enjoy together in spite of my limitations. 5. We know our commitment to each other is real. On that same tandem bike picture my husband gave me were the words, “Where You Go, I’ll Go.” We vowed on our wedding day to love each other “in sickness and in health,” but I often worried that my husband felt duped or disappointed that the “in sickness” was such a prominent part of our lives together. Instead, he took the opportunity to reaffirm that we are in this together, no matter where it goes. We know what it’s like when the worst we could have imagined happens, and we’re still here. I know without a doubt he’s not going anywhere, and he knows I’m not going either. We both know we are committed to this no matter what.

April Barcalow

5 Ways My Marriage Is Better Because of Chronic Illness

Most of us are well aware of the ways in which chronic illness or disability has impeded our lives. The list of things we’ve lost is so very long. That is the reality of this journey. But in the midst of the pain and loss, I have noticed that some things are better because of this. I am a different person as a result of my experience with illness, and so is my family. And in many ways, we are stronger for it. Here are five ways my marriage has improved because of chronic illness: 1. We have grown deeper as a couple. I thought we knew each other well, and in many ways we did. But after years of sitting at hospital bedsides, navigating new symptoms, riding the rollercoaster of chasing down diagnoses, adapting to limitations and changes, and carrying each other through the pain and loss and fear, we really know each other now. We’ve had difficult conversations about topics we never would have broached. We’ve whispered about our deepest fears in waiting rooms, or lying together in the dark at night. We’ve held each other when it was all too much, and laughed together in spite of it. Chronic illness has taken us far deeper than we’d gone before, and we’ve discovered more and more of each other with each new layer. 2. We have learned how to care for one another. We’ve navigated a lot together. In addition to the regular stresses of marriage, raising children, and our careers, we’ve had all the ups and downs of my chronic illness journey. And we have had to learn how to help each other through it. We’ve taken turns holding each other as we’ve cried, and we’ve made each other laugh in the midst of the hard times. We have each made space for the other person to rest. He’s picked up the brunt of the work on the home front, and I’ve learned what it means to support and encourage him from my post on the couch. We’ve adapted to my physical limitations to find ways to connect with one another. In so many ways, we are just better at taking care of each other than we ever were before. 3. We’ve learned to laugh in the midst of hard times. I sometimes rely on a wheelchair because of my weakness and fatigue. When I am out in the chair, I often receive comments from strangers about how brilliant my smile is. It always catches me off guard, because in some ways, wheelchair days should be my hardest. But we’ve learned to turn it around. My husband often pops wheelies when he is pushing me, or leans in to make jokes. I find that most of my memories in a wheelchair are memories of laughter. In the same way, we’ve learned to laugh at my physical limitations: the ridiculous ways I flub my words with brain fog, the way that I feel like an elderly woman with my cane, the way I make him do all the heavy lifting around the house. We poke holes in the darkest sides of chronic illness and laugh together, and it carries us both through the challenges and brings us closer. 4. We’ve found new interests and hobbies together. I loved to ride my bike before my illness. When my symptoms made riding impossible, I was devastated. But my husband bought me a picture of a tandem bike and reminded me that there is still a way back to the things we love most. A few years into my illness, we bought our own tandem bike. It’s become a favorite shared pastime. We joke that I do as much work as Kermit the Frog does on his bike (in fact, we call my frequent lack of pedaling “Kermit the Frogging”), but I find it exhilarating to be riding a bike at all again. We ride trails and roadways together, pack picnics in the bike basket, and explore new places. We’ve found a new shared interest that we can enjoy together in spite of my limitations. 5. We know our commitment to each other is real. On that same tandem bike picture my husband gave me were the words, “Where You Go, I’ll Go.” We vowed on our wedding day to love each other “in sickness and in health,” but I often worried that my husband felt duped or disappointed that the “in sickness” was such a prominent part of our lives together. Instead, he took the opportunity to reaffirm that we are in this together, no matter where it goes. We know what it’s like when the worst we could have imagined happens, and we’re still here. I know without a doubt he’s not going anywhere, and he knows I’m not going either. We both know we are committed to this no matter what.

April Barcalow

5 Ways My Marriage Is Better Because of Chronic Illness

Most of us are well aware of the ways in which chronic illness or disability has impeded our lives. The list of things we’ve lost is so very long. That is the reality of this journey. But in the midst of the pain and loss, I have noticed that some things are better because of this. I am a different person as a result of my experience with illness, and so is my family. And in many ways, we are stronger for it. Here are five ways my marriage has improved because of chronic illness: 1. We have grown deeper as a couple. I thought we knew each other well, and in many ways we did. But after years of sitting at hospital bedsides, navigating new symptoms, riding the rollercoaster of chasing down diagnoses, adapting to limitations and changes, and carrying each other through the pain and loss and fear, we really know each other now. We’ve had difficult conversations about topics we never would have broached. We’ve whispered about our deepest fears in waiting rooms, or lying together in the dark at night. We’ve held each other when it was all too much, and laughed together in spite of it. Chronic illness has taken us far deeper than we’d gone before, and we’ve discovered more and more of each other with each new layer. 2. We have learned how to care for one another. We’ve navigated a lot together. In addition to the regular stresses of marriage, raising children, and our careers, we’ve had all the ups and downs of my chronic illness journey. And we have had to learn how to help each other through it. We’ve taken turns holding each other as we’ve cried, and we’ve made each other laugh in the midst of the hard times. We have each made space for the other person to rest. He’s picked up the brunt of the work on the home front, and I’ve learned what it means to support and encourage him from my post on the couch. We’ve adapted to my physical limitations to find ways to connect with one another. In so many ways, we are just better at taking care of each other than we ever were before. 3. We’ve learned to laugh in the midst of hard times. I sometimes rely on a wheelchair because of my weakness and fatigue. When I am out in the chair, I often receive comments from strangers about how brilliant my smile is. It always catches me off guard, because in some ways, wheelchair days should be my hardest. But we’ve learned to turn it around. My husband often pops wheelies when he is pushing me, or leans in to make jokes. I find that most of my memories in a wheelchair are memories of laughter. In the same way, we’ve learned to laugh at my physical limitations: the ridiculous ways I flub my words with brain fog, the way that I feel like an elderly woman with my cane, the way I make him do all the heavy lifting around the house. We poke holes in the darkest sides of chronic illness and laugh together, and it carries us both through the challenges and brings us closer. 4. We’ve found new interests and hobbies together. I loved to ride my bike before my illness. When my symptoms made riding impossible, I was devastated. But my husband bought me a picture of a tandem bike and reminded me that there is still a way back to the things we love most. A few years into my illness, we bought our own tandem bike. It’s become a favorite shared pastime. We joke that I do as much work as Kermit the Frog does on his bike (in fact, we call my frequent lack of pedaling “Kermit the Frogging”), but I find it exhilarating to be riding a bike at all again. We ride trails and roadways together, pack picnics in the bike basket, and explore new places. We’ve found a new shared interest that we can enjoy together in spite of my limitations. 5. We know our commitment to each other is real. On that same tandem bike picture my husband gave me were the words, “Where You Go, I’ll Go.” We vowed on our wedding day to love each other “in sickness and in health,” but I often worried that my husband felt duped or disappointed that the “in sickness” was such a prominent part of our lives together. Instead, he took the opportunity to reaffirm that we are in this together, no matter where it goes. We know what it’s like when the worst we could have imagined happens, and we’re still here. I know without a doubt he’s not going anywhere, and he knows I’m not going either. We both know we are committed to this no matter what.

Casey Cromwell

17 Ways to Help People With Celiac Disease Stay Healthy

One of the most empowering things about having celiac disease, at least in my opinion, is that our health is largely under our own control. By following a gluten-free diet and learning what foods help us feel our best, we can not only live with celiac disease, but thrive! However, sometimes we need to rely on accommodations from other people to stay healthy with celiac disease. And sometimes these requests can sound a little strange at first. That’s why I’m talking about 17 “weird” requests that actually help people with celiac disease stay healthy! If you don’t have celiac disease but know someone who does, I hope this helps you understand the “why” behind some of their more unusual requests. If you do have celiac disease, I hope this lets you know you should not feel embarrassed or scared of asking for accommodations that make living with celiac disease a lot easier. So whether you have celiac disease and want to stop feeling self-conscious about accommodations or are a celiac’s loved one and want to better understand what it takes to live with celiac disease, keep reading to discover 17 “weird” requests that help people thrive with celiac disease. 1. Let me have the top shelf of the fridge. In order to make sure no crumbs will ever fall on my food, I always request the top shelf of the fridge when I’m sharing an apartment with people. Maybe this isn’t necessary since all of my food is always in containers anyway, but it makes me feel safer when sharing a fridge with people who eat gluten. And none of my roommates have ever minded when I call dibs on the top level! 2. Don’t judge me if I’d rather bring my own food to social events or restaurants, even if they have “gluten-free” options. One of the hardest things about living with celiac disease is that many gluten-free options offered today are not actually gluten-free. So if we bring our own food to events or restaurants that supposedly have gluten free options, know we’re not trying to be difficult or picky. We’re just doing what we need to in order to be safe. 3. Avoid putting paper towels or plates you’ve already used back with the fresh/clean ones. I’m all about reducing waste and reusing paper plates or towels when possible. However, if you’ve recently eaten some wheat-filled crackers on those plates or napkins, please keep them away from the clean versions! Otherwise, it can turn into a crumb-filled, crummy situation. 4. Please don’t rush me while I’m grocery shopping. Even though I was diagnosed with celiac disease over five years ago, grocery shopping can still be a challenge. Why? Instead of being able to grab whatever looks tasty, we need to read the labels and sometimes look up products on our phones. If you see me staring at my phone in a grocery aisle, know it’s not because I’m a “stereotypical millennial” addicted to technology. I’m just trying to make sure some new brand of granola bars won’t hurt me! 5. Don’t eat my food without asking. Have you ever spent the whole day drooling over the leftovers you know are waiting for you in your fridge at home… only to find out someone ate them all while you were at work? Now imagine that was the only “safe” food you had prepped ahead of time for the day… and you spent a ton more money on those special ingredients. A pretty cruddy situation, right? That’s how it feels when someone eats the gluten-free snacks in our pantry or the “special” food we splurged on buying the day before without asking. It’s awesome that gluten-free food has improved so much, people who don’t have to eat gluten-free still want to enjoy it! But please check with us before you dive into our gluten-free goodies. 6. Brush your teeth before kissing me if you’ve recently eaten gluten. Being glutened by a kiss is a controversial topic in the gluten free community. However, I personally have felt pretty crummy after kissing someone who recently ate gluten, so this is a common request I make with significant others. On the plus side, my boyfriends always joke that their dental hygiene skyrockets while dating me! 7. If you want to offer me some gluten-free food, leave it in the original packaging. I’m always so grateful when friends or family bring gluten-free food to socials or other events to let me feel included. However, if you do want to spread some gluten-free love, keep the food in its packaging. Not only will this prevent cross-contamination, but it will let us read the labels and make sure it’s truly celiac safe and doesn’t have any other ingredients that bother our system. 8. If I get “glutened,” let me get some extra rest and forgive me when my brain’s too foggy to understand what you’re saying. Everyone with celiac disease has different symptoms when they’re glutened, but I think we all need and appreciate some extra TLC when it happens. 9. Please don’t call attention to my “special” or “different” food. I get it. When I attend a Friendsgiving and am the only one to bring a Tupperware container full of my own gluten-free food, I’m going to attract some attention. But I’m always appreciative when people don’t make a big deal of my different diet and let me enjoy the party or the club meeting or whatever event I’m attending along with everyone else. 10. Keep crumbs off the counter and dirty dishes out of the sink. It may seem like we’re demanding neat freaks… but we’re just trying to lower the chances of cross-contamination in a shared kitchen. 11. Be patient when I need to spend time talking to a restaurant server and chef about my gluten-free food. When you have celiac disease, eating out can be a big challenge. And unless it’s a 100% gluten-free restaurant or a restaurant we’ve gone to many times before, we’re gonna spend some time talking to our waiter and/or chef about our gluten-free meal. But know the extra time is worth it — we’re a much better dinner date when our meal is delicious and celiac safe! 12. Don’t laugh or get annoyed when I’m packing for a trip and 90% of what I bring is emergency food and snacks. I know there are stores where we’re going for vacation. I know I don’t need to pack a million gluten-free granola bars for a three-day trip. But knowing I have some emergency gluten-free snacks on hand is a huge source of comfort. And if turns out that gluten-free food is hard to find where we’re going, my suitcase full of food is gonna be a lifesaver. 13. Be willing to experiment with some “far out” gluten-free foods, like buckwheat or banana milk or even chips made out of crickets! Especially since the gluten-free diet became “fashionable” to eat, more and more unique gluten-free products have hit the market. And I’m not gonna lie — some of them sound a little strange at first! But I’m always super appreciative when friends or family aren’t afraid to try gluten-free food, or even experiment with some more unique products. And you might be surprised how delicious gluten-free food actually is! 14. Don’t be offended if I turn down some social invitations because I don’t feel like being around a bunch of food I can’t eat. Most days, I don’t let my gluten-free diet get in the way of hanging out with friends and going to social events. But sometimes I don’t feel like going to a pizza party and packing my own food or watching everyone else eat. And it’s super helpful when friends and family know this and don’t judge. 15. Avoid bringing gluten into my gluten-free kitchen. If we have an entirely gluten-free kitchen, it’s our “safe” place. So please don’t bring gluten-filled foods, especially without asking first. 16. Let me vent from time to time when I’m frustrated about my gluten-free diet or jealous of your amazing pasta salad… Because as positive as I try to be about celiac disease, sometimes following a gluten-free diet is a major pain. 17. … But also help me remember how tasty gluten-free food can be — and how lucky I am to be able to thrive with celiac disease on a gluten-free diet! I don’t even have the words to explain how powerful a positive, solid support system is! The Bottom Line At first glance, it may seem like all people with celiac disease have to do is take the wheat out of their diet. However, like I’ve written about before, a celiac disease diagnosis changes way more than simply a person’s diet. And sometimes that means we need to ask other people — friends, family, roommate, waiters, significant others and many more — for help. And yeah, these requests can sound a bit weird the first time we ask. But know we’re doing what we need to feel healthy… and we are grateful for everyone who doesn’t mind lending us a hand. This post first appeared on Casey the College Celiac.

April Barcalow

How It Feels to Miss Out Because of Chronic Illness

When I was maybe 9 years old, my family spent a week vacationing in southern Spain. We practically lived in the swimming pool at our rented villa, and when we weren’t in the water, we were out walking through the white-stuccoed villages in the beautiful southern sun. A few days into our trip, I noticed that I had difficulty focusing my vision, and my eyes teared constantly. By the end of the week, I could barely open my eyes at all. All the bright sunlight had caused major damage to my eyes. It was several weeks before they healed fully. I had nightmares for many years after that. In my dreams, I would try my hardest to keep my eyes open and take in everything that was playing out around me. But I couldn’t keep them open. I would watch the scenes disappear through my blinking eyelids until everything went black. When I could see again, everything had changed and the “plot” had moved on, leaving me struggling to understand what was happening. More often than not, I awoke feeling panicked. Fast forward many years. I’m grateful that I don’t have massive vision impairments (although I frequently have trouble focusing, light sensitivity, and muscular issues with my eyes). Even so, I often feel I’m living out the nightmare scenes of my childhood. I live with chronic daily debilitating fatigue. My days, especially the bad ones, are lived by ounces of energy, each one measured out carefully for the activities that are absolutely necessary. And in between, I am most often resting with my eyes closed or sleeping. It’s the only way I can survive my symptoms and get through my day. The frequent periods of rest sometimes make my life feel just like the flickering scenes in my nightmares: small glimpses before my eyes again close and everything goes black. I sleep through family dinners, social gatherings with friends, evenings with my children, and would-be workdays. I close my eyes in the middle of church, for brief periods at my desk at work, in the middle of supper. My whole existence feels, at times, like a quick snapshot before everything is empty and dark again. And just like in my dreams, the “plot” moves on while I’m away. I miss out on conversations, changes, and developments that occur. I play catch-up on things that have happened without me, and try to suppress the feeling of loss over things I’ve missed out on altogether. It can be a lonely, isolating, sad experience. I know I’m not alone in this. Many of us in the chronic illness community feel we miss out on many things in life, and not just because of fatigue. My celiac disease diagnosis keeps me from enjoying the foods everyone else is eating at carry-ins and birthday parties, and dictates which restaurants I can eat at or where I can travel. We miss out on activities we love, such as biking, hiking, walking, or dancing because of chronic pain or fatigue. We live our lives in the little margins of what’s possible, the slivers of light before our illness shuts us off from the world again. There’s no easy solution, and, to be honest, what we often need isn’t to be “fixed.” For me, it helps to know I’m not the only one living in the margins, seeing my world through my fluttering eyelids. If others are living this too, then I’m not alone. And that makes the darkness less lonely.

April Barcalow

How It Feels to Miss Out Because of Chronic Illness

When I was maybe 9 years old, my family spent a week vacationing in southern Spain. We practically lived in the swimming pool at our rented villa, and when we weren’t in the water, we were out walking through the white-stuccoed villages in the beautiful southern sun. A few days into our trip, I noticed that I had difficulty focusing my vision, and my eyes teared constantly. By the end of the week, I could barely open my eyes at all. All the bright sunlight had caused major damage to my eyes. It was several weeks before they healed fully. I had nightmares for many years after that. In my dreams, I would try my hardest to keep my eyes open and take in everything that was playing out around me. But I couldn’t keep them open. I would watch the scenes disappear through my blinking eyelids until everything went black. When I could see again, everything had changed and the “plot” had moved on, leaving me struggling to understand what was happening. More often than not, I awoke feeling panicked. Fast forward many years. I’m grateful that I don’t have massive vision impairments (although I frequently have trouble focusing, light sensitivity, and muscular issues with my eyes). Even so, I often feel I’m living out the nightmare scenes of my childhood. I live with chronic daily debilitating fatigue. My days, especially the bad ones, are lived by ounces of energy, each one measured out carefully for the activities that are absolutely necessary. And in between, I am most often resting with my eyes closed or sleeping. It’s the only way I can survive my symptoms and get through my day. The frequent periods of rest sometimes make my life feel just like the flickering scenes in my nightmares: small glimpses before my eyes again close and everything goes black. I sleep through family dinners, social gatherings with friends, evenings with my children, and would-be workdays. I close my eyes in the middle of church, for brief periods at my desk at work, in the middle of supper. My whole existence feels, at times, like a quick snapshot before everything is empty and dark again. And just like in my dreams, the “plot” moves on while I’m away. I miss out on conversations, changes, and developments that occur. I play catch-up on things that have happened without me, and try to suppress the feeling of loss over things I’ve missed out on altogether. It can be a lonely, isolating, sad experience. I know I’m not alone in this. Many of us in the chronic illness community feel we miss out on many things in life, and not just because of fatigue. My celiac disease diagnosis keeps me from enjoying the foods everyone else is eating at carry-ins and birthday parties, and dictates which restaurants I can eat at or where I can travel. We miss out on activities we love, such as biking, hiking, walking, or dancing because of chronic pain or fatigue. We live our lives in the little margins of what’s possible, the slivers of light before our illness shuts us off from the world again. There’s no easy solution, and, to be honest, what we often need isn’t to be “fixed.” For me, it helps to know I’m not the only one living in the margins, seeing my world through my fluttering eyelids. If others are living this too, then I’m not alone. And that makes the darkness less lonely.

April Barcalow

How It Feels to Miss Out Because of Chronic Illness

When I was maybe 9 years old, my family spent a week vacationing in southern Spain. We practically lived in the swimming pool at our rented villa, and when we weren’t in the water, we were out walking through the white-stuccoed villages in the beautiful southern sun. A few days into our trip, I noticed that I had difficulty focusing my vision, and my eyes teared constantly. By the end of the week, I could barely open my eyes at all. All the bright sunlight had caused major damage to my eyes. It was several weeks before they healed fully. I had nightmares for many years after that. In my dreams, I would try my hardest to keep my eyes open and take in everything that was playing out around me. But I couldn’t keep them open. I would watch the scenes disappear through my blinking eyelids until everything went black. When I could see again, everything had changed and the “plot” had moved on, leaving me struggling to understand what was happening. More often than not, I awoke feeling panicked. Fast forward many years. I’m grateful that I don’t have massive vision impairments (although I frequently have trouble focusing, light sensitivity, and muscular issues with my eyes). Even so, I often feel I’m living out the nightmare scenes of my childhood. I live with chronic daily debilitating fatigue. My days, especially the bad ones, are lived by ounces of energy, each one measured out carefully for the activities that are absolutely necessary. And in between, I am most often resting with my eyes closed or sleeping. It’s the only way I can survive my symptoms and get through my day. The frequent periods of rest sometimes make my life feel just like the flickering scenes in my nightmares: small glimpses before my eyes again close and everything goes black. I sleep through family dinners, social gatherings with friends, evenings with my children, and would-be workdays. I close my eyes in the middle of church, for brief periods at my desk at work, in the middle of supper. My whole existence feels, at times, like a quick snapshot before everything is empty and dark again. And just like in my dreams, the “plot” moves on while I’m away. I miss out on conversations, changes, and developments that occur. I play catch-up on things that have happened without me, and try to suppress the feeling of loss over things I’ve missed out on altogether. It can be a lonely, isolating, sad experience. I know I’m not alone in this. Many of us in the chronic illness community feel we miss out on many things in life, and not just because of fatigue. My celiac disease diagnosis keeps me from enjoying the foods everyone else is eating at carry-ins and birthday parties, and dictates which restaurants I can eat at or where I can travel. We miss out on activities we love, such as biking, hiking, walking, or dancing because of chronic pain or fatigue. We live our lives in the little margins of what’s possible, the slivers of light before our illness shuts us off from the world again. There’s no easy solution, and, to be honest, what we often need isn’t to be “fixed.” For me, it helps to know I’m not the only one living in the margins, seeing my world through my fluttering eyelids. If others are living this too, then I’m not alone. And that makes the darkness less lonely.

April Barcalow

How It Feels to Miss Out Because of Chronic Illness

When I was maybe 9 years old, my family spent a week vacationing in southern Spain. We practically lived in the swimming pool at our rented villa, and when we weren’t in the water, we were out walking through the white-stuccoed villages in the beautiful southern sun. A few days into our trip, I noticed that I had difficulty focusing my vision, and my eyes teared constantly. By the end of the week, I could barely open my eyes at all. All the bright sunlight had caused major damage to my eyes. It was several weeks before they healed fully. I had nightmares for many years after that. In my dreams, I would try my hardest to keep my eyes open and take in everything that was playing out around me. But I couldn’t keep them open. I would watch the scenes disappear through my blinking eyelids until everything went black. When I could see again, everything had changed and the “plot” had moved on, leaving me struggling to understand what was happening. More often than not, I awoke feeling panicked. Fast forward many years. I’m grateful that I don’t have massive vision impairments (although I frequently have trouble focusing, light sensitivity, and muscular issues with my eyes). Even so, I often feel I’m living out the nightmare scenes of my childhood. I live with chronic daily debilitating fatigue. My days, especially the bad ones, are lived by ounces of energy, each one measured out carefully for the activities that are absolutely necessary. And in between, I am most often resting with my eyes closed or sleeping. It’s the only way I can survive my symptoms and get through my day. The frequent periods of rest sometimes make my life feel just like the flickering scenes in my nightmares: small glimpses before my eyes again close and everything goes black. I sleep through family dinners, social gatherings with friends, evenings with my children, and would-be workdays. I close my eyes in the middle of church, for brief periods at my desk at work, in the middle of supper. My whole existence feels, at times, like a quick snapshot before everything is empty and dark again. And just like in my dreams, the “plot” moves on while I’m away. I miss out on conversations, changes, and developments that occur. I play catch-up on things that have happened without me, and try to suppress the feeling of loss over things I’ve missed out on altogether. It can be a lonely, isolating, sad experience. I know I’m not alone in this. Many of us in the chronic illness community feel we miss out on many things in life, and not just because of fatigue. My celiac disease diagnosis keeps me from enjoying the foods everyone else is eating at carry-ins and birthday parties, and dictates which restaurants I can eat at or where I can travel. We miss out on activities we love, such as biking, hiking, walking, or dancing because of chronic pain or fatigue. We live our lives in the little margins of what’s possible, the slivers of light before our illness shuts us off from the world again. There’s no easy solution, and, to be honest, what we often need isn’t to be “fixed.” For me, it helps to know I’m not the only one living in the margins, seeing my world through my fluttering eyelids. If others are living this too, then I’m not alone. And that makes the darkness less lonely.

April Barcalow

How It Feels to Miss Out Because of Chronic Illness

When I was maybe 9 years old, my family spent a week vacationing in southern Spain. We practically lived in the swimming pool at our rented villa, and when we weren’t in the water, we were out walking through the white-stuccoed villages in the beautiful southern sun. A few days into our trip, I noticed that I had difficulty focusing my vision, and my eyes teared constantly. By the end of the week, I could barely open my eyes at all. All the bright sunlight had caused major damage to my eyes. It was several weeks before they healed fully. I had nightmares for many years after that. In my dreams, I would try my hardest to keep my eyes open and take in everything that was playing out around me. But I couldn’t keep them open. I would watch the scenes disappear through my blinking eyelids until everything went black. When I could see again, everything had changed and the “plot” had moved on, leaving me struggling to understand what was happening. More often than not, I awoke feeling panicked. Fast forward many years. I’m grateful that I don’t have massive vision impairments (although I frequently have trouble focusing, light sensitivity, and muscular issues with my eyes). Even so, I often feel I’m living out the nightmare scenes of my childhood. I live with chronic daily debilitating fatigue. My days, especially the bad ones, are lived by ounces of energy, each one measured out carefully for the activities that are absolutely necessary. And in between, I am most often resting with my eyes closed or sleeping. It’s the only way I can survive my symptoms and get through my day. The frequent periods of rest sometimes make my life feel just like the flickering scenes in my nightmares: small glimpses before my eyes again close and everything goes black. I sleep through family dinners, social gatherings with friends, evenings with my children, and would-be workdays. I close my eyes in the middle of church, for brief periods at my desk at work, in the middle of supper. My whole existence feels, at times, like a quick snapshot before everything is empty and dark again. And just like in my dreams, the “plot” moves on while I’m away. I miss out on conversations, changes, and developments that occur. I play catch-up on things that have happened without me, and try to suppress the feeling of loss over things I’ve missed out on altogether. It can be a lonely, isolating, sad experience. I know I’m not alone in this. Many of us in the chronic illness community feel we miss out on many things in life, and not just because of fatigue. My celiac disease diagnosis keeps me from enjoying the foods everyone else is eating at carry-ins and birthday parties, and dictates which restaurants I can eat at or where I can travel. We miss out on activities we love, such as biking, hiking, walking, or dancing because of chronic pain or fatigue. We live our lives in the little margins of what’s possible, the slivers of light before our illness shuts us off from the world again. There’s no easy solution, and, to be honest, what we often need isn’t to be “fixed.” For me, it helps to know I’m not the only one living in the margins, seeing my world through my fluttering eyelids. If others are living this too, then I’m not alone. And that makes the darkness less lonely.

April Barcalow

How It Feels to Miss Out Because of Chronic Illness

When I was maybe 9 years old, my family spent a week vacationing in southern Spain. We practically lived in the swimming pool at our rented villa, and when we weren’t in the water, we were out walking through the white-stuccoed villages in the beautiful southern sun. A few days into our trip, I noticed that I had difficulty focusing my vision, and my eyes teared constantly. By the end of the week, I could barely open my eyes at all. All the bright sunlight had caused major damage to my eyes. It was several weeks before they healed fully. I had nightmares for many years after that. In my dreams, I would try my hardest to keep my eyes open and take in everything that was playing out around me. But I couldn’t keep them open. I would watch the scenes disappear through my blinking eyelids until everything went black. When I could see again, everything had changed and the “plot” had moved on, leaving me struggling to understand what was happening. More often than not, I awoke feeling panicked. Fast forward many years. I’m grateful that I don’t have massive vision impairments (although I frequently have trouble focusing, light sensitivity, and muscular issues with my eyes). Even so, I often feel I’m living out the nightmare scenes of my childhood. I live with chronic daily debilitating fatigue. My days, especially the bad ones, are lived by ounces of energy, each one measured out carefully for the activities that are absolutely necessary. And in between, I am most often resting with my eyes closed or sleeping. It’s the only way I can survive my symptoms and get through my day. The frequent periods of rest sometimes make my life feel just like the flickering scenes in my nightmares: small glimpses before my eyes again close and everything goes black. I sleep through family dinners, social gatherings with friends, evenings with my children, and would-be workdays. I close my eyes in the middle of church, for brief periods at my desk at work, in the middle of supper. My whole existence feels, at times, like a quick snapshot before everything is empty and dark again. And just like in my dreams, the “plot” moves on while I’m away. I miss out on conversations, changes, and developments that occur. I play catch-up on things that have happened without me, and try to suppress the feeling of loss over things I’ve missed out on altogether. It can be a lonely, isolating, sad experience. I know I’m not alone in this. Many of us in the chronic illness community feel we miss out on many things in life, and not just because of fatigue. My celiac disease diagnosis keeps me from enjoying the foods everyone else is eating at carry-ins and birthday parties, and dictates which restaurants I can eat at or where I can travel. We miss out on activities we love, such as biking, hiking, walking, or dancing because of chronic pain or fatigue. We live our lives in the little margins of what’s possible, the slivers of light before our illness shuts us off from the world again. There’s no easy solution, and, to be honest, what we often need isn’t to be “fixed.” For me, it helps to know I’m not the only one living in the margins, seeing my world through my fluttering eyelids. If others are living this too, then I’m not alone. And that makes the darkness less lonely.