Most people would say the holiday season can be stressful, and when you are chronically ill, this time of year can offer added stress and exhaustion.

In the online communities I’m part of, I start to see the anxiety levels increasing with questions like, “How will I prepare a meal?” or “How do I get my house ready for guests?” 

This is a list for the chronically ill and their loved ones to help them not just survive the holiday season and family gatherings but to enjoy the celebrations as well. This is what we need our friends, family and the wider community to understand about our challenges during this time of year.

1.  We have to plan ahead carefully.

I’m sure many with chronic illnesses are like me: I have a careful plan whenever I leave the house, and I try to prepare for all contingencies. Going to family gatherings or parties requires even more planning. This may mean bringing medication, mobility aids and fluids with us. If we’re going to a friend or family member’s house, we may need to discuss our needs with the host or family members.

Many of us wish we could participate in holidays the way we used to, including cooking, decorating and hosting gatherings. To do these things, many of us have to prepare over a few days or weeks. If we try to do it all in one day, we won’t be able to enjoy ourselves or could end up bedridden.

If we have to travel, it’s important to have emergency supplies on hand with us. It’s important to prepare for the worst and hope for the best. Traveling is also extra taxing on the chronically ill, so it may require more time for rest. Each of us knows how much energy we have, so it’s important to conserve and use it judiciously. And we need understanding from others that rest is an essential part of managing an illness.

2. We may need to ask for your help.

During the holidays, it’s easy to set unrealistic expectations for ourselves, whether you’re healthy or chronically ill. If we know an activity will sink us, we may need to ask for your help. Maybe we’ll have to delegate cleaning or cooking. Maybe we’ll have to explain complex dietary needs. Asking for help is hard. Please understand when we ask for help, we’re not asking out of laziness or trying to seek attention. Asking for help is against my nature, but I’ve learned the hard way that when I didn’t ask for help when I should have, I ended up not succeeding.

We know more than anyone else what we’re capable of, so when we communicate our challenges, it’s a declaration of trust. We all need people in our lives who we can rely on when we’re facing challenges. This is especially true for those who live with illness.

3. We have to set realistic expectations.

There can be so much pressure this time of year to create perfect memories with our family and friends. We want our house to look perfect. We want to have the perfect holiday dinner, the perfect party and the perfect gift wrapped in effortless ribbon and glitter. Who can do this? Our holiday doesn’t have to look like it was immaculately conceived in a Pinterest lab. Perfection isn’t realistic for anyone.

I believe it’s especially unrealistic for the chronically ill. It’s easy to ignore our own needs to maintain the appearance of functionality, but our self-preservation is of the utmost importance. We need our friends and family to help us enjoy this time of year without setting ourselves up for failure.

4. Include us in conversations at gatherings.

I often think about how I’m not sure what to say at gatherings. I’m not working, I usually only leave the house for appointments and I spend most of my time managing symptoms and rewatching “Downton Abbey” for the thousandth time. What do I have to discuss with anyone? Sometimes illness can be the elephant in the room when you’re with friends and family, but it doesn’t have to be a focal point. Although some with chronic illness don’t have a vibrant external life, this often strengthens a person’s internal life. We still have much to share.

It can be difficult not to feel sad or even resentful when we hear others discuss working, traveling or exciting social lives. These feelings can take us out of the present and make us feel worse about our quality of life. But I’ve found a lot of joy in just listening to others discuss what they’re doing and living through those experiences vicariously. I think illness has given me the gift of being a better listener and living more in the present. It has made me more compassionate as well. Even though we live on a different scale than most, we want to share ideas and thoughts or just enjoy listening. Include us in the conversation, because we would love to participate and share your company.

5. We have to celebrate on our own terms.

There are a variety of reasons someone with chronic illness has to spend the holiday alone or limit their holiday plans. Health issues can create rifts between family members, and just the sheer physical stress of traveling or going to gatherings is too much for some. I’ve seen some use their online health communities to celebrate with others and feel less alone this time of year.

Sometimes dietary restrictions or energy levels can make participating in gatherings challenging. If we can’t fully participate, please understand we need to celebrate on our own terms. When I go to a gathering, I make sure there’s a place for me to sit or lie down when I need to take breaks. Celebrating on our own terms means we can have a comfortable holiday without extra stress or pressure.

6. We need to celebrate in spite of our challenges.

Maybe the overwhelming stress of cooking a turkey, the sight of singing Santas or having to hear Paul McCartney’s “Wonderful Christmastime” one more time is putting you over the edge, but it’s easy to lose sight of the fact that this is a time of year for all of us to celebrate, reflect and feel gratitude. 

It’s easy to focus on what we have lost because of illness, but it’s also important to find something to celebrate, whether it’s spending time with friends and family, cheating by eating food we normally wouldn’t allow ourselves to eat or wearing something sparkly, even if we aren’t leaving our couch.

We need to have some fun and carve out some celebration and enjoyment for ourselves, because we’re seldom truly able to indulge. For many of us with illness, leaving the house and participating in a gathering can be a rare treat, and we often try to participate despite the toll it might take on our bodies. This time of year can make taking that risk worth it.

We are survivors and warriors, and this time of year is a reminder that we made it through another year of battling illness with dignity and grace. That, more than anything else, deserves celebration.

Follow this journey on Kind of Broken.

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 [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.


Your world has been shattered, and you’re sad, mad and confused all at the same time. But you still feel love, even more fiercely and strongly than you ever have. Hold onto that love. It will carry you through your journey.

I hope you found out about your little one before they became sick. That sounds silly, doesn’t it? I mean, they’re most likely about to have major open-heart surgery. But I just said “sick” like it will go away. It won’t. It’s lifelong. I hope you at least have time to prepare, hold your child and kiss him, and not find out he’s barely holding onto life as he’s turning blue like our little one did at 7 days old.

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We thought he was healthy, but he wasn’t. But remember love? Remember to hold onto it, because that love is so strong and will convince you your child is invincible and tough and will make it through. It will assure you he will be OK, even when things look so bleak the doctor may tell you this is it. Because hopefully it’s not. And love will hold you up as your world comes shattering down.

I believe that’s the one blessing of this oh so scary situation. You will learn to love your child so deeply, so hard and so much it will literally pull you through the haze. I spent a month in the hospital with my firstborn as he clung to life and had surgery. He got stronger and then weaker before he was better again. It was love that held me together as I was only able to look at him, as I shuffled through hospital halls and as I went to sleep in a bed that wasn’t mine. It was love that overflowed when I could touch his hand or hold his finger, and then finally, hold him and rock him until my arms ached.

Love is strong. Love heals. Love is what you lean on when there’s nothing else to do. You may often hear, “I don’t know how you handle it all,” because there will be a lot. A lot of appointments, a lot of days in the hospital — both expected and unexpected — a lot of medications and new terminology and a lot of new people you never thought you would meet. Doctors, nurses, secretaries, pharmacists and families just like yours.

There will be a lot of people supporting you. Others you’ll never see again, and there may be even a few you wish would just go away. But you will handle it. You will handle this new life full of fear and the unknowns. You will live for this child and become a heart mom or dad. Every last waking minute — and sometimes in your sleep, too — you will think of your child, because you’ll know how to truly love beyond belief. And in return you will get the greatest gift — a child who loves you just as fiercely in return. And your whole world will be so much brighter for it.

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Our son loves so hard and is so sensitive and strong and amazing that his love is infectious. It just pours out of him. He sees every silver lining. He lives every experience to the max. And it seems everyone he meets loves him just as much as you could imagine in return. He makes the world shine. He makes every moment so worth it. He made me learn what true and unending love is, and I feel it every day because of him.

To the new parents of a child in this scary situation that no one should experience, I want you to know you will do it. You will make it. You and your child are strong, because you have each other and you have love. At the end of the day, that will be enough, and it will get you through. Your first and last thought of the day will be how much you love that little soul, and he will love you just as much in return, if not even more. And it will make every day from now until forever so worth the journey. So don’t be scared. Just love.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [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.

I was born three months prematurely, surprising my parents as an early wedding anniversary gift. Yes, I totally crashed their wedding anniversary date. My mom had gone in for a scan, and before she knew it, she needed to give birth. I weighed no more than 2 pounds and was in the hospital for three months.

At 3 months old, I caught meningitis and was diagnosed with an incurable disease called complicated Ebstein anomaly. Although they never show it, I know my parents lives changed a lot that day. I will live with this illness for the rest of my life. I have my bad days and good days.

When I asked my mom what it was like to see me so small and sick, she said, “I just wanted to bring you home.”

My parents took photos and created an album for me. I don’t look through them often. When I do, I can’t believe how small and fragile I was. I can’t imagine what it must have been like for my parents to watch me like that, not knowing if I would ever come home.

It was always awkward at school when we had to bring in pictures of ourselves as babies. I remember one time, I brought my photo in, and my “friends” looked and laughed, saying, “You look like an alien.” They asked, “Why do you look like that?” and “What are those tubes?” I would explain I was born early and had an illness, but no one understood. “You’ve got a metal heart” and “You don’t have a heart” they said. “Alien,” they would shout. The phrase that hit me hardest: “You’re not normal.” At the time, I laughed with them, but at home I cried and for a time felt ashamed of what I looked like as a baby.

The photos may not look like your typical baby photo. However, they are me, and that is what I went through and still live with. I wish people understood what it’s like to look back at yourself in that state. To spend your first moments in a hospital and most of your childhood around doctors and surgeons. When you laugh, you’re not laughing at a picture — you’re laughing at me.

Since then, I find it extremely hard to visit babies in the hospital. There are times I’ve visited a cardiac ward and seen babies in incubators with several tubes coming out of them. I’ve cried and left the ward to pull myself together again. When I see a parent watching over their child huddled in an incubator, all I want to do is go up to them and apologize for what they are going through, but also give them hope for the future.

Recently someone asked me, “How do you heal from something that is incurable?” You don’t! You learn to live with it, and it becomes part of who you are. A part of you that is unique and amazing.

There are so many things I want to say to those of you who were premature or are living with illness — whether you were born with it or have just been diagnosed, and for you and your loved ones, because it’s just as hard on them. If you would like to see my message, you can do so via this video.

I never knew Prematurity Awareness Month existed, but I’m so glad it does. It’s a time for people to remember premature babies and to celebrate them. It’s also a time to raise awareness and hope for those going through it.

To the parents of premature babies, know “it’s OK not to be OK.” I can’t imagine what it must feel like. Know you’re not alone. There are people out there going through the same thing. To the parents of premature babies who have perhaps lost their child, I am truly sorry for your loss.

For the premature babies, newborn or now grown up: I believe only the best people are born early. “Good things come in small packages.”

Follow this journey on Hannah’s Heart Beat and the Hannah’s Heart Beat Facebook page.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or illness, and what would you say to teach them? 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.

This time of year is set up to be wonderful. You gather with friends and family, some you haven’t seen in a while, and you all sit down and enjoy a meal together. On Thanksgiving, the football game is on TV while the younger children play with each other or with their older cousins. On Christmas, kids tear into their packages excited about what could be inside, then eat dinner and sweets. For me, now that I have a chronic illness, the holidays just aren’t as much of a joyful celebration as they use to be, and sometimes I’d just rather opt out than be the odd one out. Call me a Grinch if you wish, but hear me out.

The extra work it takes to plan and host such a big meal can be exhausting. While I don’t have to do a ton of that work, what little I do, like chopping veggies to help my grandma or cleaning up the bathroom, is taxing. It leaves me in need of a few days to recoup, but I’m not going to get that rest time because if I’m prepping for a holiday, said holiday is the next day, and people expect to see me.

The extra commotion, whether it be from the younger members of the family or just the large number of people all combined in one house, can be over-stimulating for me. The shrieking of the children playing, the cheers of the guys watching the football game and the never-ending questions from family I haven’t seen in a while can quite easily give me a migraine — not just a mild one, but a severe one that lasts for days after.

Then comes the food. You don’t really notice how every holiday revolves around food until food is something you can’t have. Thanksgiving? The whole point is to sit together around a big dinner table and share a huge meal that puts half the family in a turkey coma. Christmas? Same idea, but this time we add in those beloved Christmas cookies. But I know all of that food is going to make me feel sick, if not actually get sick. I am tube-fed 24/7 for this reason, and a lot of the time it’s hard to sit and watch everyone else eat and not eat myself. Or sometimes I feel obligated to eat something because of the hard work everyone put into making the food, and I don’t want to be disrespectful, even though I have a perfectly valid reason for not wanting to eat.

So a lot of times I go lie down during the mealtime. It’s just easier to go back into my own little world and not have to sit around everyone and watch them eat the food I used to devour before I got sick.

There are other things I feel like everyone expects me to do on a holiday, no matter my health status that day, like play with the younger cousins, speak to everyone and answer the same question a million times. But the biggest thing I feel like I am forced to do is just being present among my relatives. It looks bad when I just hide out in my room while everyone else is out in the living room and kitchen being social. Even if I’m not present because of health reasons.

The last big thing about holidays that’s hard on me because of my chronic illness is the “constantly going” feeling. By that, I mean someone is wanting to talk to you, the kids are wanting you to play with them, and no matter how hard you try (or what you’ve done to need alone time to rest up your already battered body), there is no taking a “rest” on either Thanksgiving or Christmas.

So please understand that if on Thanksgiving or Christmas, I or someone you know with a chronic illness needs a break, it’s nothing you have done, and it’s not us wanting to “get out of” doing some of the tasks nobody wants to do in the first place (like cleaning the bathroom or washing dishes).

Instead, we would give anything to be out and socializing and spending time with you, our family, but with a chronic illness, some things are just out of our control. Sometimes we’re forced to take a time-out whether we like it or not.

And if we have taken said time out, that means we’ve pushed well past what we should do, and we hate every minute of not being involved in the holiday.

Follow this journey on A Teen and Her Tubie.

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 [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.

I remember sitting there debating if I should hit the “join” button. After all, I didn’t really need a support group. I had things figured out (or so I thought). I had done my research and found information about my unborn baby’s diagnosis. I had support from family and friends to help me through my pregnancy and what would come after delivery.

Was a support group really necessary? All I was looking for was a little extra information, insight and deeper understanding from those who had received the same diagnosis and who had walked this road before me. Could joining a Facebook group really help?

Three and a half years later, I’ve come to realize that clicking “join” was one of the best choices I could have made. I had no idea this simple Facebook group would become like a second family to me. Not only would they provide me with extra information, they would shower me with love and give me a type of support I never realized I would need. As we approach Thanksgiving and this season of gratitude, I would like to take a moment to express my thankfulness for an amazing group that has meant more to me than I could have ever imagined.

Dear Group,

Thank you! From the bottom of my heart, thank you! I don’t have the words to express how much help I have received from each of you. Although most of us have never met in person and probably never will, we have been united by our babies, and we have a bond that runs deep into the heart. We have laughed together and cried together. We have shared some of our most treasured and heartbreaking moments with each other. Together, we have celebrated the brief lives of our babies and mourned their passing. It doesn’t matter that we’re scattered all over the world; we are truly together.

Once again, thank you! You have helped me celebrate every bittersweet anniversary and walked with me through both the dark days and the days of joy. I’m thankful to have a place where I can be honest and open about my fears, sorrows and heartache, as well as my joys, excitement and triumphs. 

You have welcomed each emotion and experience with open arms, love and support. You have answered my questions, shared the stories of your babies and your personal experiences and provided me with comfort as I faced the unknown. 

You never judged me for the choices I made during my pregnancy or after journey. Instead, you extended arms of compassion and understanding. You have provided me with a safe and welcoming place to share openly about my sweet son, his life, his death and his legacy.

As the years have gone on, you have also provided a place for me to give back. You have allowed me to share my experiences and the things I’ve learned through this ongoing journey. You have allowed me to walk alongside each of you. You have allowed me take my turn to encourage, support and uplift others. I’m thankful that not only have I received so much from this amazing group, but that I have also been able to reciprocate.

Although we were brought together by circumstances beyond our control (circumstances we wouldn’t wish upon our worst enemy, because none of us would wish others to experience the loss of a child), I’m so thankful we have all found each other. Our bond is one that most will never be able to fully understand. Thank you for passing along not only wisdom and insight but also genuine love and friendship and for allowing me to do the same.

I’m happy to know each of you and the stories of your sweet babies and how they left an impact on this world. I never expected our group to mean so much to me, but you have truly become like second family and hold a special place in my heart.

With deep gratitude and love,

Bethany (your sister in this ongoing journey)

I encourage each of you to take a moment and thank the groups that you have provided you support and encouragement during your journey. It can be easy to take a support group for granted or forget just how much they’ve done to help shape your journey. This Thanksgiving, let us remember to thank those we’re connected to on a special level through the unique circumstances in our lives.

If you are on the fence about joining a group or never thought about how a support group could possibly help you during your experience, I encourage you to take a chance. Join a group. Connect with others who are experiencing similar things as you. Not every group will become “family,” but walking a hard road is always better with the support of others.

I’m so glad I decided to hit the “join” button all those years ago!

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 [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.

Lead photo source: Thinkstock Images

It’s not earth-shattering. In fact, it’s probably the same advice you got when you first started dating years ago. And I wish someone had given it to me.

Here it is:

Hang on to your friends.

Hang on tight.

Here’s why:

There’s going to be a time when they surround you.

They’ll be there for you. They won’t know what to say and will probably say things that they regret or things that make you cringe. They will probably stick their feet in their mouths. (“Will she ever be normal?” Yikes.) But that’s just because they don’t know what to say. How could they? This is all new to them, too. They’re learning along with you. If you keep them close, they’ll get better at finding the right language.

There’s going to be a time when they give you space.

There’s a steep learning curve when faced with a diagnosis. There are appointments, specialists, research to do, feelings to feel and a lot of processing time. You’re gonna need to muddle your way through it. You’re going to get really busy. They’ll check in and see how you’re doing. They’ll cry with you and celebrate with you, but you’re heading down a road that can’t fully follow you down. Send postcards. Fly over to their road when you can.

Photo credit: barebonephoto

There’s going to be a time when you realize your path is never going to be the same as their path.

This is going to make you feel lots of things. Jealous. Angry. Resentful. It might make you feel bad that you feel all these feelings, and none of them are good. It’s going to make your paths feel even further apart. Take a few minutes to look around, find things that are the same on your path and reach out. I know, you’re thinking, “Why should I reach out, I’m the one going through the hard time.” Reach about because it’s boot season and you need a new pair. Reach out because your favorite coffee is back for the season and you have to have one. Reach out because when you do, you remember your life has many paths, and your child is just one of them. You’re still in there.

There’s going to be a time when all those early intervention appointments that kept you busy come to an end.

Those therapists you saw all the time and chatted with and had standing “dates” with will move on to other clients, you’ll move on to a new schedule and you’ll realize you didn’t need to see your friends when you had people who really “got” where you were in your life. Your regular therapists and various nurses were living the smallest details of your reality with you. You didn’t have to mention your new haircut. They noticed. But all of a sudden, they are gone and two years have passed, and where does time go? Meet a friend after your haircut. Plan a lunch after speech therapy. Call a friend on the drive to PT.

There is going to be a time when you finally catch a friend at a good time, and they are going to say something like, “Well I don’t want to complain. Let’s talk about something else.”

You’re going to realize your friends don’t want to unburden to you… you who have so much on your plate. They don’t want to talk about how busy they are, knowing you’re doing twice as much. They don’t want to talk about how tired they are, knowing “my kid doesn’t sleep” means your child actually doesn’t sleep until, like, 5 a.m. every day. They don’t want to celebrate their life with you either. They don’t want to talk about their travel plans or their kids’ successes because they know those things aren’t your reality right now. Let them know you do want to know what’s going on, that you want to hear what’s bringing them down and that you are excited for their lives and their kids (even though there may be days it’s hard to hear it).

There’s going to be a time when look at the calendar and realize you can’t remember the last time you ____________.

There’s going to be a time when you realize that, in addition to being tired and worried and so incredibly busy taking care of your child, you are lonely. Friends who are “giving you space” during this tough time might be waiting a long time to return. So don’t let that happen. Hang on to your friends. Be gentle when they stuff a foot in their mouths, and then the other shortly after. Don’t begrudge them for being happy or make them feel less than for having an easier time that you. Let them know you could really use a friend. Ask if they can meet near you. Or accommodate a weird schedule. Or keep inviting you to things, even though you often have to say no. There will be days you can say, “Yes!” So say yes. Then go. Have fun. Make more plans. Hang on. Encourage them to hang on, too.

Hang on tight.

Follow this journey on Mommydo.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [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.

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