7 Healthy Steps to Plan a Sick Wedding

7 Healthy Steps to Plan a Sick Wedding

This one’s going out to all my ladies because statistically you gal pals are the ones planning your weddings, and let’s face it, girl talk is fun.

After the popping of the question and the saying of the “yes,” comes the hard part — planning what is widely advertised as “the most important day of your life.” For me, our wedding was the best day ever, but all that pressure certainly didn’t help anything. Add in my chronic illness and the whole planning process became a recipe for disaster. I learned a lot through each meticulous plan, and while there’s an infinite number of different kinds of brides, these were the 7 steps that worked for me!

1. Erase the word “perfect” from your prenuptial vocabulary.

In fact, you may want to erase it from your post-nup vocab, too. Planning what is essentially a gigantic party for everyone you’ve ever met and held dear (as well as a bunch of people you’ve never met but apparently your parents and future in-laws hold dear), is a task that’s filled with mega-pressure from day one. Don’t let it freak you, though. As much as you can, as often as you can, try to let go.

Practically speaking, Randy and I got this one right from the beginning, by each making a list of our top 5 priorities that actually mattered most to us. Without this quick step at the very beginning, it would have been so easy to end up over budget and overly stressed. When you get that bridal tunnel vision (and unfortunately that’s almost a guarantee at some point on your matrimonial adventure) it’s hard to keep perspective and easy to start to feel like even the little ultimately-insignificant details are worth your time and energy. After all, no one ever remembers the beige undertones of your flower girl’s tights or the fact that some of the tables had slightly smaller centerpieces. Narrow it down and keep your focus there. And by focus I mean your valuable-and-not-infinite energy. Things are going to go wrong on your wedding day — something always does. Know that ahead of time, become okay with that ahead of time, and as long as you end the day married…mission accomplished, my friend! Let the rest go, girl.

Practical step:

Plan a time to sit down with your fiancé when each of you can go through this exercise. Secret ballots, though…no peeking! On separate pieces of paper, each write down your top 5 priorities and rank them in order of importance to you (florals, attire, venue, photography, food, music, etc.). When you’ve each ranked your top 5 priorities, compare lists and discuss what matters most to each of you. If there’s any overlap on your lists…make that a priority. And whatever stole the #1 slot for both of you is important to keep in mind, too.

2. Take the help!

My saint-like mother is no-doubt chuckling reading this because she’s far more qualified to be writing the whole article than I am. She planned the vast majority of our wedding, and Randy and I genuinely couldn’t have done it without her. Whether it’s a mom or a group of close friends, your bridesmaids or siblings, ask for help and delegate, delegate, delegate. And hey, if your budget allows, get yourself a wedding planner! It wasn’t in the budget for us, but more power to you if you can hire a new bff to make everything magical. 

I’ll tell you right now that this thing is impossible to plan strictly solo, especially with your body’s surprising and sometimes unfortunate “bag of tricks” (read also: symptoms). And this is one of those seasons in your life where everyone is cheering you on, and so many people are eager and willing to help. Swallow your pride and take the help.

Practical Step:

Call, text, or send smoke signals to your close friends and family, and ask them to help you with specific projects. Delegate by handing off clear and direct tasks so that you can cross it off your list, and they know exactly what they’re agreeing to. And then leave the ball in their court by asking them to followup with you when the task is completed. With a reliable friend and successful communication, you shouldn’t need to hover or check in on their progress.


3. Put it ALL on the table.

In addition to planning a wedding, you’ll also be doing all the last-minute prep for your husband to become your #1 partner in your journey to health and wellness. You don’t want to go into marriage with your brand new husband in the dark about your symptoms, the cold hard truth about your illness, or even what you’d like his role to be when you’re having a flare or a particularly hard season. They’re men, ladies, not mind-readers. Let this become your mantra. 

It’s officially time to make sure that he understands your health at great length. If it’s redundant and he’s already up-to-speed, great! But this man is about to become your “in case of emergency” contact. He’s walking into the role of official caretaker, and at times he’s going to need to be your health advocate. Now is not the time to be shy. Does he know how to handle your health scares and flares? Does he know even the correct terminology so that he can communicate with first responders or doctors if need be? 

Practical Step:

Plan a time to have one big health conversation with your fiancé. Make it a fun time with your favorite coffee drinks or sitting in a park, but really talk through everything and anything you can think of from the details of your symptoms to your primary care doctor’s name to what you each expect his role to practically look like as he becomes your official caretaker.

4. Plan A is important, and Plan B is non-negotiable.

Now I don’t want to overwhelm you sister-friends, but in addition to making arrangements for bridesmaid dresses and reception centerpieces, you may also want to consider giving some serious thought to creating an environment that will accommodate you in case your symptoms are flaring on your wedding day. 

For me, this was non-negotiable. Many of you know that I was blessed to have hundreds of people all over the world praying for me on my wedding day that I would be healthy and unusually symptom-free. After all, there is that fear we all have that our wedding day will somehow also be one of those horrible flare days. My day came and I had no flares, no nasty symptoms, no crazy health scares, but I also had peace of mind because I had fully prepped for a very different scenario. For instance, I was concerned about not being able to stand for the whole wedding ceremony, so we reserved a chair in the front row just in case, complete with secret hand signals with a trusted friend who would have, should the worst have happened, discreetly brought it up front. We had communicated our plan B to the entire wedding party at the rehearsal as well as the pastor so that everyone could keep going and play it cool rather than alarm our guests and cause a big scene. This is just one of the contingencies I made. I also listened to James Taylor all day to relax and help my anxiety, stashed snacks and medicine everywhere I went all day, and sat down at every opportunity. But I can’t tell you how much relief it gave me to know that, should the worst have happened, it wouldn’t become a big scary “to-do” for my guests, or a moment of unprepared panic for me.

Whatever your biggest health concerns are for that day, if there’s anything that could help address it, go the extra mile and treat yourself to some peace of mind!

Practical Step:

Either on your own or with your fiancé or a bridesmaid, grab some paper and write down the big health-related fears you have for your wedding day. Next to each fear, write a plan that will help you address that fear. This can be something tangible (like a chair in case you can’t stand), or even a perspective shift and something you’re going to mentally think and focus on anytime that fear pops up.

5. Honeymoon Day 1: REST.

The day after your wedding you’ll be tired. Emotional exhaustion from seeing everyone who matters to you the day before and bawling your eye-sockets out and living through the best day of your life will have set in. If not, congratulations…and are you sure you’re reading the right article? 

You might be thinking, “Wow, the day after the wedding will be a sexy little day and/or a great day to hop on the first plane out and whisk my newlywed husband away for a honeymoon extravaganza.” Thank the good Lord himself that we were given this advice before our wedding because we most certainly did NOT whisk ourselves away in those first 24 hours. What we did instead was sleep, newlywed-sexy-time, sleep, and watch Fixer Upper in the bed of our honeymoon suite hotel room while eating pizza and leftover wedding cake. This was a lifesaver and neither of us can stress that enough. Even my healthy husband was so thankful in retrospect that we didn’t jump on that midnight plane. 

Practical Step:

Add this conversation to your checklist. Find a time to talk to your future groom about planning to rest the day after your wedding! Why? Because once again I remind you, they’re men, ladies, not mind-readers! Communicate those expectations and have a chat!

6. Say “it’s okay” to not having sex that day.

I can almost hear the roar of shock and awe as women clutch their pearls and fan their flush cheeks. But this is real and let’s talk about it! While the events of our wedding night are strictly private, what I can tell you is that this is a very honest conversation that Randy and I had BEFORE our wedding. Again, emotional and physical exhaustion may well have set in by dusk on your big day, and there’s a lot of pressure to have sex on your wedding night. While sex is a gift and the most intimate way to connect to your freshly-hitched spouse, if you’re not feeling up to the horizontal mambo that night (gross, even writing that feels sleezy), it’s okay. No guilt, girlfriend! No shame! You’ve got your whole life to connect sexually. Just talk it out ahead of time!

Practical Step:

DO NOT FORGET TO TALK TO YOUR FIANCÉ ABOUT THIS. Whether you end up doing what married folks do or not that night, this is a conversation you need to have before your big day. Talk about all of your expectations for the wedding night, yours and his, particularly any concerns you might have about your health in relation to sex. Unvoiced expectations will almost always lead to frustration and disappointment.

7. Spend more time planning for your marriage than your wedding day.

By far this step outweighs the rest. Your wedding will be special and magical because it’s the day that starts your journey, but it is just one day. 


Randy and I went through weeks and weeks of pre-marital counseling with a married couple. There was a curriculum, homework, and a LOT of hard questions. I realize that adding “one more thing” on your bridal plate doesn’t sound enticing, but how good is it to talk through so many of the hard things ahead of time and save yourself some of those “first year of marriage fights” that we’ve all heard about? Admittedly, I thought we had covered all the hard stuff long before we got into counseling, but to my surprise, as it turns out, we did not. Not by a long shot. Not even a little bit. Going through this process, there are questions that would never have come up for us in any conversation otherwise. We both highly recommend this to every glowing and engaged couple in sight.

Even aside from premarital counseling, guard your conversations! It becomes freakishly easy for all of your communication with your fiancé to become wedding-centric and equally as hard to talk about anything else in the weeks and months leading up to your big day. Be intentional and talk about the future together! Dream about what you want your average weeknight dinners to be like in the home you’ll create. Talk about things you want to do on your weekends as a married couple! On Saturday mornings are you more of a pancakes-and-pjs couple or a get-out-and-take-a-hike couple? It’s fun, but it takes intention.

Practical Step:

Consider going through premarital counseling as a couple. A lot of churches will offer it for free, and ladies, “free” is not a word you’ll be hearing at all through your betrothed pilgrimage of planning bliss. Also, keep your date nights a priority. At least once a week, aim to spend time on a date (even if you’re not spending money), and refuse to use that time as wedding planning central. Guarding this time will serve you well in gearing up for a great life together!

There you have it, gals! I genuinely couldn’t be more excited for you to step into marriage with someone you love so dearly. Cultivate that kindness, keep it patient between the two of you, take the pressure off, and set a great tone for your life together! Marriage is a wild adventure, it’s an endless opportunity to learn about yourself and your partner, and it’s such a gift. 

Happy planning, sis!

Written by: Anna Kowlessar, Founder of People Hope

After many years of dealing with her own chronic illness, Anna founded People Hope to fill a much-needed void that so many people are looking for today - a place of audacious hope, a genuine community, and somewhere to belong regardless of diagnosis. You can read more about that here. Or you can keep reading this to learn that a few of her obsessions include cuddling with her dog, Walter Norman, singing ridiculous made-up songs with her husband, Randy, and snacking on salty-sweet treats! She loves Christmas, hates the color lavender, and adores her amazing Tribe!

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People Hope is 100% donor-funded by people just like you, and we need your help to keep publishing hope-giving resources like this one! You can make a gift right now, or even sign up to join our Core Team of monthly supporters for as little as $10/month!

10 Tips to Survive a Chronically Ill Christmas

10 Tips to Survive a Chronically Ill Christmas

It’s the most wonderful time of the year! The holidays are here and all is festive and bright! But let’s just dig right into it — for those of us with chronic illnesses, it can be more than just merry and jolly; it can feel stressful and exhausting. But let’s declare together that it doesn’t have to be that way! By taking care of ourselves and embracing some simple steps, we can not only feel prepared to embrace every aspect of the holidays, but also to do so with joy, enthusiasm, and most importantly — FUN!

I have so many fun memories from my childhood of Christmases past — you know, before I realized chronic illness was a thing that was going to impact my life deeply. All of that changed in 2012 for me, when I received my first diagnosis. It was the week before Thanksgiving, and a massive lifestyle change was forced upon me. That first holiday season was one of the hardest of my life. I had no idea how to take care of myself or prioritize my health, especially in the midst of a busy holiday a season. And to top it off, my entire family had no idea how to approach all that I was going through. 

Thankfully, I’ve learned a lot since those days. Now I look forward to Christmas each and every year, and I firmly believe that you can as well! As I share these ten tips for surviving the holiday season, I hope they bring you hope, relief, and an action plan as you celebrate this merry time!

Tip #1: You’ll Need a Partridge, a Pear Tree, and a Plan of Action

Let’s be real — dealing with chronic illness has, in some ways, made planners out of all of us. We have to think ahead in order to take care of our health. So let’s plan ahead, make the holidays as stress-free as possible, and actually embrace all that this season has to offer. Whether it be planning meals ahead so you don’t have to worry, buying and wrapping Christmas presents early, or coordinating travel, a solid action plan can empower you to really savor the special moments.

To start, set aside at least 30 minutes to think through all of your holiday plans — events, big meals, travel, gifts, etc. — and evaluate areas that need a little more thought or planning to eliminate stress in the long-term. This way you can get done what you need to without dragging your body along last-minute! Healthy planning equals healthier bodies and states of mind.

Tip #2: Peace on Earth; Priorities in Place

Prioritize everything from meal planning, to gift shopping, to visiting friends and family, to fun holiday activities, to making time for rest and your health. Take a hard look at your needs and the things that matter most to you, and then prioritize the things you need to tackle versus the things you can delegate or even let fall by the wayside altogether. We don’t have to do it all! And just in case you need to hear it from someone — it is always, absolutely okay to prioritize your health when you need to! Take care of yourself, friend!

Tip #3: Forget the Fruitcake; Stash Your Own Sugarplums

If you are on a special eating plan for your health needs, don’t hesitate to bring your own food to holiday functions! I know it might feel awkward at first, but best to have your needs met than silently sit by watching everyone else enjoy themselves, or worse — finding yourself eating foods you’ll pay for later in harsh symptoms.

Practically speaking, if others are cooking, and you trust them, make sure to communicate your needs to them ahead of time! If others are cooking, and you don’t trust them, just be proactive and let them know that you’ll be bringing your own foods. Communication ahead of time will help you navigate around hurt-hostess-feelings and unnecessary food surprises. 

And for those of you who are in a place where you can indulge a bit without it impacting your health, go for it! This season is meant to be enjoyed and celebrated, so let’s do just that! After all, food can be one of the best parts!

Tip #4: Rockin’ Around the Old Routine

Whether you travel for Christmas or you’re staying home, stick to your routines. Take medications and supplements when you are supposed to. Make sure you are getting adequate rest and stick to your sleep schedule as much as possible. Don’t change around what your body is used to just because of the busyness of the season or because travel may factor into the equation. We thrive best when we give our bodies what they need!

What does this look like practically? Will you sleep better if you bring your own pillow? Pack it. Will you forget to take your medications when your away from home? Set reminders in your phone. Will you be able to still eat foods that support your health when you get to your destination? Run out to the grocery store upon arrival. Will you have a hard time going to bed while everyone’s still up having a good time? Set an alarm to jump in your pjs, and stick to it!

Tip #5: Don’t Let Germs Sleigh Your Immune System

These winter months can sometimes be the worst on our immune systems, and even our emotional and mental states. Do what you can to protect yourself! Do the things that bring you joy and keep you uplifted. Give your body what it needs to keep your immune system working in optimal condition, and try to avoid hotspots for seasonal yuck.

And then…let go of the stress! Yes, let’s prepare and plan and do our best to keep our bodies healthy, but we also need to let go of the fear of catching a hypothetical bug. Stressing out about a potential cold or flu is only going to weaken our whole system. So when we've done everything we can to stay well, it’s time to trust in our health regimens, and say “no” to the fear that tries to rob us of the joy of the season.

Tip #6: Even Rudolph Needs to Rest

Take time to rest! I know it is so easy to view rest as selfish, especially with all the other burdens we carry during this season, but hear me right now — it’s okay to take time to rest! You need it! And if you take care of yourself, you’ll have more to offer your friends and family in return. So take time to rest and do the things that you want to do, and don’t feel pressured to “do it all.” Advocate for yourself when you need to; say “no” if you have to. Don’t get carried away by the season and push it too far because paying for it later just isn’t worth it.

Tip #7: Now Welcoming All Holly, Jolly, Holiday Help

Accept help! We don’t have to do everything on our own! Whether it is a parent or a friend or a spouse that understands the road you walk, make sure they are in your corner all the more during this Christmas season. If they want to go shopping for you, let them. If they want to cook a meal for you, let them. We can’t walk this journey by ourselves; we need others. So let others walk with you not only this holiday season, but throughout your illness journey in general.

Tip #8: Make Room for Merry Misunderstandings

This can be a hard one, but we might as well just get it out in the open — accept ahead of time that you will be misunderstood. Oftentimes the holidays gather us with friends and family who don’t understand the world of chronic illness, and I know how deeply their remarks can cut. I know it can feel painful when people comment on what you are eating or how you are taking care of yourself or the fact that you are choosing to prioritize your health over other things. But you have to do what’s right for your body! 

They’re not the ones who are going to pay the consequences of pushing yourself too hard or eating foods you can’t tolerate or staying up too late, so why are you giving their opinion any weight on the matter?

Long before you walk into that family gathering with Uncle Rick who somehow always says something offensive about your illness, accept that it’s probably going to happen, and decide how you want to handle the situation. Give yourself the opportunity ahead of time to decide that those comments don’t need to carry weight for you. This will make it easier to manage when the misunderstandings happen, and will give us the ability to brush it off and give grace to folks who just don’t get it.

Tip #9: Give Yourself the Gift of Gratitude

Everyone talks about thankfulness in November, but by December many of us have tinsel-tunnel-vision that prevents us from reaping the benefits of practicing regular gratitude. The truth is that the holiday season is rich with beauty and joy, but it will undoubtedly bring you at least one or two Scrooges or Blue Christmas moments. The trick is to manage them well and prevent them from stealing your holiday spirit. 

Your joy is worth protecting, especially in a season that can cause us all to feel the grief of our illnesses in a unique way. So get serious about the habit of writing down 10 things that you’re grateful for at the end of every day. If you know you’ll have to write them down, you’ll certainly spend your days looking for the good even on your more challenging days. Amidst all the gifts that you give and receive this year, you might just find that the most valuable one is the gift of gratitude you’ve given yourself all season long!

Tip #10: Add Fun to Your Christmas List

This may seem obvious, and to some of you it may even seem impossible, but plan to have fun! It is the most festive time of the year, and with a little extra determination (and the other 9 tips), we don’t have to allow the fact that we have chronic illnesses to steal that from us. Maybe you have difficult memories from Christmases past, or perhaps your stress levels have been off the charts already, but it’s still possible to celebrate, and celebrate well! 

Figure out some things that YOU really want to do during this season and make those things happen. Don’t let chronic illness tell your story — YOU get to tell your story. Have fun decorating the tree and creating new memories and spending time with friends and family! Cozy up to watch some cheesy Hallmark movies, and savor the long nights for some extra rest! Sing along to your favorite Christmas songs and embrace the jolly!

We can take our would-be stressful Christmas seasons and trade them in for joyful ones! All it takes is a little bit of planning, prioritizing, and choosing the right mindset! Here’s hoping this year will be filled with some amazing new habits that give way to festive, fun memories for you. 

Merry Christmas, my fellow warriors!

Written by: Kelly Halsch

Our world-traveler extraordinaire, Kelly Halsch was born and raised in New York, but now lives and represents the People Hope Tribe in Maryland. Her big dreams include things that many of us can relate to like going to a restaurant and ordering off the menu without making special requests or asking a thousand questions about allergens. Her dogs are her babies, she admits to watching too many episodes of Real Housewives, she’s terrified of ET (yes, from the fictional film), and she’s on a mission to try every local juice bar. But her heart is made alive when she writes, and is there anything more stunning than a woman who sets her mind on encouraging others? We think not. 

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People Hope is 100% donor-funded by people just like you, and we need your help to keep publishing hope-giving resources like this one! You can make a gift right now, or even sign up to join our Core Team of monthly supporters for as little as $10/month!

Our 4th Birthday

Happy Birthday, People Hope!

Ahh…they grow up so fast, don’t they? I can’t help but smile and chuckle as we raise our collective feet to step across this mile marker together. We’ve come so far, and the life-change, the momentum, and accomplishments are breathtaking. I asked you to send in a note to share how People Hope has impacted your life, and through an outpouring of cards, notes, and letters, I’m a puddle of humbled tears as I read your words on this very special day.

Four years.

I’m humbled to read your words on this very special day.

Four years of simple posts on social media that find their way into your world at exactly the right moment to remind you that you’re not alone and to turn your whole day, your perspective, and your outlook around. Four years of community that relentlessly and vulnerably shares from the most raw, spectacular places in life — encouraging one another even at our lowest points, and celebrating with each other in our victories. Four years of stories shared, voices heard, and moments where the words “me too” replace former voids of being known and understood. Four years of articles and practical tools that empower us all to live to the fullest, even through our chronic illnesses. Four years of friendship, faith, highs and lows.

Four years of hope.

I thought of you, with the trauma, the fear, the scars — both physical and emotional, battling not only the daily realities of your body, but also the minefield of a life with ongoing sickness.

I can tell you this — I thought of you when I set out to start People Hope in the first place, long before I ever knew your names or saw your profile pictures or uttered a hopeful word. I thought of you — you, with the disease you hate and the hope that seems fading as you thought you were alone in your struggle. I thought of you — you, with the friends who have left you and the family that’s estranged thanks to an illness that you only wish you could escape. I thought of you — you, with the trauma, the fear, the scars, both physical and emotional, battling not only the daily realities of your body, but also the minefield of a life with ongoing sickness. I thought of you — you, with your faith hanging by a thread, or maybe already severed, longing for the God you once believed in, but wounded by misguided “church people” who told you this was somehow your fault. I thought of you, friend.

And now, as we celebrate our birthday together, I’m still thinking of you, because now I know your names, your families, your highs and lows. I’ve celebrated with you on your mountaintops, and I’ve cried with you in your valleys. I think of you because you’ve truly made People Hope something special to behold — a place that is genuine, honest, authentic, vulnerable, vibrant, rich in love and understanding and empathy and that fighting spirit that I hear echo in each of your warrior hearts.

Friends, today is ours to share and celebrate together, because today this thing that you’re a part of and this thing that we’ve grown together turns 4 years old. I can promise you that the best is yet to come on the very near horizon, and year 5 will certainly not disappoint. There’s no one else I’d rather step into this fresh, new season with than this Tribe I’ve come to know and love so dearly.

I can promise you that the best is yet to come on the very near horizon, and year 5 will certainly not disappoint.

So throw some confetti and bake up the cake…this is worth celebrating! Happy, happy birthday, People Hope! You’re something fierce to behold.

All my love,


Written by: Anna Kowlessar, Founder of People Hope

After many years of dealing with her own chronic illness, Anna founded People Hope to fill a much-needed void that so many people are looking for today - a place of audacious hope, a genuine community, and somewhere to belong regardless of diagnosis. You can read more about that here. Or you can keep reading this to learn that a few of her obsessions include cuddling with her dog, Walter Norman, singing ridiculous made-up songs with her husband, Randy, and snacking on salty-sweet treats! She loves Christmas, hates the color lavender, and adores her amazing Tribe!

Want to see more amazing things like this?

People Hope is 100% donor-funded by people just like you, and we need your help to keep publishing hope-giving resources like this one! You can make a gift right now, or even sign up to join our Core Team of monthly supporters for as little as $10/month!

It Is Well

It Is Well

It’s like a seesaw. That’s always my answer when they ask me, “What’s it like?” There are ups and downs, and no shortage of highs and lows. My health and so much of my life mirrors a giant, unpredictable pendulum that’s wildly out of my control. But through the ups and downs, and amidst the swinging extremes, I’ve learned the simplest peace of this: “it is well.” 

Twelve years. That’s how long I’ve been sick and in pain every minute of every day. That’s how long I’ve struggled through doctor appointments, specialists, tests, trying different medicines and treatments, left with no answers or medical hope for my situation to ever change. After twelve years I’m no stranger to ups and downs in my body, my emotions, and even my faith. 

All of Laina’s photos are courtesy of our friend  Kelsey Butcher Photography .

All of Laina’s photos are courtesy of our friend Kelsey Butcher Photography.

My physical seesaw began right as I was starting high school. I started having pain in my hips that limited me physically. My doctor assured me that, with rest and Ibuprofen, I’d be back to my normal self soon. But I wasn’t. Within the span of the school year, the pain spread throughout all my major joints and muscles. For several years I tried different doctors and tests hoping to figure out the cause of this immense pain. The answer was always the same, “There’s nothing we can find, just rest.” After three and a half years I received a phone call that I had been praying for yet simultaneously dreading at the same time. My latest test results came back showing the presence of an autoimmune disease in my body. The pain I was experiencing wasn’t just in my head. It was being caused by my own body attacking itself. It was a mix of emotions as this discovery finally meant validation and hopefully would give some direction as how to treat my pain. Yet at the same time, the finding also robbed me of the hope that one day whatever was causing me to hurt would be gone and I would be pain-free again. Seesaw up, seesaw down. 

The pain I was experiencing wasn’t just in my head.

Emotionally, the years of living in constant pain had left me tired, drained, and hopeless. My outlook on life was negative. I was mad and frustrated. Mad that it happened to me, someone who had always followed the rules. Frustrated that no one could understand the battle and suffering I was enduring or even seem to care. I began to view the world and those around me through lenses of jealousy and bitterness. Each day I was throwing the pity party of the year for myself, and I was shocked when no one else wanted to attend. One day a friend pointed out to me how much I was complaining about my pain. In that moment I swung my emotional pendulum from one extreme to the other and decided I was going to just keep it all to myself. I bottled up all my feelings inside which in turn only made things worse. I felt like such a fake because on the outside I was projecting that everything was okay, but deep inside I was miserable. Pendulum left, pendulum right. 

I felt like such a fake because on the outside I was projecting that everything was okay, but deep inside I was miserable.

Even my soul hasn’t been immune to the ups and downs. My life changed forever five years ago when I decided to commit my life to my faith in Jesus. Surrendering my life over to God filled me with a sustaining peace unlike anything I’d ever experienced before. I wish I could say that in that moment my pain disappeared forever, but life is messy and that’s not my story. For several years I struggled with how my faith and my sickness could coexist. How was I supposed to maintain this hope I had found when all of my external surroundings were telling me otherwise? I thought things would be different now that I was a Christian. I trusted and believed God could do what doctors said was impossible and heal me. But nothing changed. I gave up and just accepted that I was going to be in pain for the rest of my life. 

So much of my hope was invested in something that was completely unstable and constantly changing. I was basing hope on a seesaw that changed within minutes without warning.

It was through that rollercoaster ride of trying to process acceptance of my disease that I started to take a deep look inward. I realized that while I had placed some of my hope in God, I also had a lot of hope invested in the state of my health. So much of my hope was invested in something that was completely unstable and constantly changing. I was basing hope on a seesaw that changed within minutes without warning. For me, I needed something solid to base my hope in. Something I could always count on that would never change. Instead of turning my hope towards things that were constantly shifting, I began to fully turn my hope towards heaven. As a Christian, I believe in the promise of heaven. I believe that, because of Jesus, I can look forward to the promise of eternal life, free of tears and pain and sickness. I can confidently say that today, this is in whom I’ve wholly placed my hope. 

The seesaw hasn’t changed; my chronic pain is a constant battle of ups and downs. I have good pain days and bad pain days. Sometimes it seems like the bad pain days will never end. When I’m in the middle of a long, painful flare it can get really overwhelming, and it’s hard to think that this is something I have to live with for the rest of my life. It seems impossible. That’s when I turn my focus to Jesus and to the promise of the healing that will come one day in heaven. This focus has helped me to make peace with my disease. The ups and downs remain, but so does that ever-sustaining peace. 

I still wonder “Why?” Why me? Why doesn’t God heal me? I don’t know the answers right now. What I do know is that God has a plan for my life. I may spend the rest of my time here on Earth in pain, but I believe I will spend eternity in heaven free of disease and pain. Because I have shifted my hope to heaven, I’m at peace with whatever may happen here. 

I still struggle everyday with wanting my pain to be gone. I struggle with wanting to be “normal” and be able to live and enjoy my life like every other average late twenty-something. Each day I miss the way my life used to be and I grieve the plans I had made for my future before chronic pain entered into the equation. But I look to the future with hope. My life is still full, meaningful, and valuable with chronic pain. Adopting this new viewpoint has empowered me to live a life I’ve always dreamed of. 

The ups and downs remain, but so does that ever-sustaining peace. 

There’s an old hymn that says, “it is well with my soul.” Should I wake up tomorrow with my pain increased, it is well. Should I wake up and my pain be gone, it is well. Should my health continually get worse and worse until I lose it all, it is well.There’s no way for me to predict how my pain is going to affect me in the future, or to know where this seesaw, pendulum life will take me, so I choose to focus on what I do know and walk forward. What I know for certain is an eternity free of pain and disease awaits me in heaven. What I know will not shift in this seesaw life is this — God is for me and He is with me. He has promised healing and victory. God is my constant, and the peace that comes from having a personal relationship with him is sustaining. When I live my life in the mindset of “it is well,” the ever-shifting reality of life with chronic illness is far less unstable; my heart is anchored. I have no idea what the future holds for me and my health but whatever it is, it is well. There is peace, there is an unwavering hope throughout the ups and downs, and there is a constant for my soul. It is well. 

Written by: Laina Matocha

You might already know that Laina is one of the courageous FIbro-Warriors in our Tribe, but would you have guessed that this girl considers “any form of potato” to be one of her fave foods? Us either. You also might be interested to learn that Laina’s a bit of a thrill-seeker (read also: bucket list includes cage diving with sharks), her guilty pleasure TV show is 90 Day Fiancé, her happy place is Paris, and yes, we’re spilling the beans that her secret talent is that she can lick her elbow. But let’s get serious, this girl has a major heart for anti-human trafficking. And somehow her heart for justice and advocacy that cares so deeply for the oppressed outshines all of her sweet, relatable quirks. She can kick it with us any day. 

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6 Steps to Get the Most Out of Your Doctor Visits

6 Steps to Get the Most Out of Your Doctor Visits

As I sit in the waiting room, for what seems like the hundred-millionth time, my stomach is tied up in knots. Of course, my doctor is running behind. I try not to get agitated, as I know he is more-than-likely spending valuable time with other “complicated” patients like me, but the increased wait time is agonizing. A medical assistant’s footsteps are heard echoing down the hall. With a chart in her hands she calls a patient’s name. My heart skips a beat, and as someone else’s name is called, my anxious heart pounds away. After what seems like a decade has passed, my name is called and my husband and I follow the medical assistant to my assigned appointment room.

It is well-known within the chronically ill community that the appointment room is just another waiting room in disguise. I sit in the exam chair across from my husband with so many butterflies in my stomach it feels I might take flight. My mind is buzzing with thoughts, questions, and, of course, worries. Will Dr. such-and-such take my symptoms seriously? Will he believe me when I tell him that healing can be achieved, and we just need to keep digging? Will he throw his hands up in the air and quit on me, like other doctors have in the past? Am I prepared? Do I even know what to say or ask?

Dodging my husband’s gaze and staring at the wall in front of me, my eyes begin to well up with tears. Then I remember what I just asked myself. Am I prepared? This is what I aim to help you with today: being prepared, feeling confident and achieving a good outcome at the end of every doctor visit. Since the day I asked myself that all-important question and formulated a game plan for each appointment, my confidence has grown, and I no longer obsessively fear the waiting rooms in my future. These are the 6 tips that took me from underprepared to professional patient.

1. Ask Your Q’s, Get Your A’s

Last year following an appointment, I found myself sitting on the floor of an AirBnB as I threw my head in my hands and wept. It had been an exhausting and disappointing day at the specialist’s office. My mother and I had traveled to Massachusetts all the way from Oklahoma for five days of appointments, and this was the end of day four. It wasn’t looking hopeful. I had tried all week to communicate my symptoms and thoughts to my doctor, and had seemingly gotten nowhere. Each time I would try to say something intelligent and thought-provoking, it came out as desperation in the form of an ugly blob of feelings — not much for the doctor to work with. After a good cry I decided to write out a script for my next morning’s visit. I made sure to include every question I had for my doctor, as well as every idea I had to contribute concerning my treatment. Script in hand, I walked into the exam room confident that my voice would be thoroughly heard.

If the name of the game is preparedness, then making a list of questions is the resounding chorus! Whether you’ve got the memory of an elephant or a houseplant, we all need to be able to use our appointment time wisely. So before you even venture to your local hotspot (read also: clinic or hospital), make a list of all of the questions you want to ask your doctor. Do you have any symptoms you want to ask about? Any questions about a medication? Heard of a new treatment that you might want to consider? Take time and really think this through because, as you very likely know, your face-to-face time with your doctor is the time that you have his or her most focused attention. Emails and phone calls after the fact are a last resort, and coming prepared will save you time, confusion, and the emotional anguish of sitting on the phone listing to awful hold music.

And for bonus points (aka: your sanity), pack a pen and paper or a handy cell phone app to jot points down during your visit. With chronic illness it is common to cover many topics during one office visit, and receiving so much information at once can be overwhelming! Let your doctor know at the beginning of the appointment, that not only have you written down thoughts to share, but that you will also be taking notes during your visit because you greatly appreciate his/her willingness to hear your voice concerning your care. Which leads me to...

2. Have an Attitude of Gratitude

As the old saying goes, “You catch more flies with honey than vinegar,” the same goes for each doctor visit. Your doctor starts his or her days early, probably ends his or her days late, is rushed in-between, and cares for patients who are desperate for healing all day. This would weigh anyone’s cheery disposition down! When your doctor opens the door to your appointment room, have an attitude of gratitude. Letting them know that you greatly appreciate their willingness to hear you out, answer your questions and treat you, is more likely to lead to a successful visit. I have found that telling doctors that you value their time goes a long way! Praising them for what sets them apart is also crucial in fostering a good partnership. For example, I always make a point to tell my specialty eye doctor, that I greatly appreciate his understanding of the fact that I know my body best, how he trusts that I am well-versed concerning my disease, and how he allows me the opportunity to tell him my thoughts on possible options for treatment. Be genuine, offer a gracious tone, and you will see how much more you can achieve out of each visit.

3. Speak Up: Positive, Polite, Professional, Persistence

Okay so we’ve got the gratitude thing covered, and now it’s time to self-advocate. When diagnosed with a chronic illness, you are in it “for the long haul,” and learn quickly that self-advocacy and persistence are both key in managing your health. This is no less true before, during, or even after your doctor visits! And persistence can look different from one patient to the next. Whether it’s positively and politely asking as many questions as you have, offering your insight into new treatments that you might want to explore, daily calling to check on a waitlist to get in and see your next specialist, or calling your insurance company with the determination of a champ, your persistence is going to make a huge difference in the care that you receive. Remember, you know your body best, and your doctor has studied and worked tirelessly to earn their title, so together, there’s potential for a great partnership. The key to healthy self-advocacy is persisting with a positive, polite, and professional disposition. This type of persistence during and even after your appointment will yield beneficial results.

4. Bring Your Quarterback, Not the Whole Team

Like many of you, my chronic illness is so “special,” that I travel many miles to see a specialist. Going solo to visit a doctor in your hometown is daunting enough; let alone across the country! Add the element of facing air travel and possibly weeks spent separated from the ones you love to the mix and you have a recipe for quite the breakdown. For these reasons I always bring my closest companion with me on my medical trips and doctor visits. For me, this is either my husband or mom. Bringing “your person” adds a sense of calm, familiarity, and sometimes most importantly, a healthy distraction.

This trusty companion also serves the all-important purpose of being another ear in the room of your appointment, as well as an advocate for your care. Many times my husband or mom will catch something I missed during the appointment or will be able to speak for me if I am overwhelmed in the exam room.

Now, a single confidant in the exam room is one thing, but any more folks than that could create a sense of “ganging up” on your doctor. Don’t open your appointment up to too many differing voices creating an air of confusion. This is not to say that the rest of your team does not play a valuable role in your care! I may travel to my doctor visits with my “quarterback,” but the remainder of my team is at home praying for me and encouraging me daily with check-ins, encouraging texts, and hopeful social media posts...I’m looking at you, #peoplehopetribe!

5. Sing “Bye, Bye, Bye” As Necessary

While some doctors are so knowledgeable, genuine, and caring that they deserve to be praised with the adorations of an *Nsync love song, you might need to jam out to “Bye, Bye, Bye” with a few underwhelming docs in order to get there. They’re not all winners who will welcome your list of questions or meet your attitude of gratitude with genuine care. Some will become frustrated with your persistence, no matter how polite or appropriate you may be. So at the first roll of the eyes, look into changing to a new doctor. There are other specialists and doctors who might be a better fit for you, and if you’re able to venture out to find someone new, don’t hesitate!

This isn’t always an option, and sometimes, between insurance restrictions or just the lack of specialists in your area, you might have to “Love the One You’re With.” In this case, keep using the other tips, and might I recommend keeping Selena’s “Kill ‘Em With Kindness” on repeat?

6. Have Some Fun While You’re at It

As mentioned earlier, many of us travel to see our beloved specialists. Being away from home can make you feel uneasy and vulnerable, adding to the anxious undertone of your visit. Instead, make your out-of-town experience memorable and fun! One benefit of seeing an out-of-town specialist, is that they are often located in large, interesting cities offering plenty of free parks, gardens, and museums. Even if you are only in this new place for a day or two, you can still hit up a few “must-sees.” Often, “my quarterback” and I will ask my doctor or nurse where the best restaurant is or where the best walking trails are. These are two great options of things to do in-between my appointments, allowing me to de-stress before my next one.

Allowing yourself this down time, even if just to eat lunch at the best burger joint in town, will give your mind a chance to decompress and lift your mood. Changing your perspective and choosing to see the positives within your unique chronic illness will open your mind and will allow for a positive exam room atmosphere!

And just like that you’re ready to hit your local clinic, fully prepared to maximize your visit and rock some confidence while you’re there. I’ll be thinking of you the next time I sit in that waiting room next to “my quarterback,” armed only with my list of questions, pen and paper, an attitude of gratitude, and a determination to have some fun. We’re in this together, and now we’re all a lot more prepared, too!

Written by: Tarah Foster

Who doesn’t love a personal trainer whose fave food list includes pizza and ice cream? Yes, Tarah’s a girl we can all relate to, she’s an incredible member of our Tribe, and we love her for it! You can find her with a cup of herbal tea, cozied up with her cat, Bernard, while she paints abstract art, but her real “happy place” is anywhere near the ocean where she can be closer to the dolphins and marine life that make her heart soar. Through her journey with Corneal Neuralgia and severe dry eye, Tarah’s learned to live with chronic pain and is wildly passionate about sharing the lessons that she’s learned along the way! We’ll listen to her beautiful insights any day, and are honored to stand in the Tribe with this awesome chick!

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