Am I Worth Less?

September 2, 2019September 2, 2019 ~ kristalauren ~ 18 Comments

One of the hardest parts about having a chronic illness is feeling like I have less value because I am not contributing as much to the community as my peers. Before I got sick I was working toward pursuing a career in journalism. I took internships, worked part time at a newspaper, and was excited to continue my journey working at Seventeen magazine to hopefully impact young women in a positive way. I have always felt that words are one of the most powerful tools we have, and all of us have a wonderful opportunity to lift others up and make them feel less alone in this big world.

I always dread the question, “So, what do you do?” when I meet someone new. I hate explaining right off the bat, “Well, I got sick when I graduated from college, so I’m trying to get back on my feet and am working on getting my health in line.” Over five years later now I have made leaps and bounds in progress, but I still am figuring out how to manage what I’ve begun to accept as my new normal. Not only is my answer incredibly awkward, but I also just feel so lame not having a cool job or anything to show for my life. I worked so freaking hard before I got sick and have absolutely nothing to show for it anymore. The internship I had at a national news company isn’t relevant anymore, and my job at Seventeen wasn’t able to materialize into what it could have because I couldn’t even walk down the driveway to the mailbox when I first got sick. My illness didn’t just take my body away from me; it took away every sense of normalcy I had ever worked to create. I have nothing to be proud of, and feels like I can’t make an adequate contribution to society anymore. I have relied on others to take care of me, when all I have ever wanted to do was be able to take care of others.

If anyone who had a chronic illness told me they felt worthless, my heart would feel completely broken and I would try as hard as I possibly could to show them what an enormous, ugly lie that was. People shouldn’t feel like they don’t have worth in this world just because their body doesn’t work the way it’s supposed to. Our value does not reside in what we do — or don’t do — for a living, and people can still change lives when their bodies don’t work properly.

Whether or not you are a Christian, I think the Bible has a really beautiful sentiment about our worth as human beings. Psalm 139: 13-14 says, “For You [God] formed my inward parts; You knitted me together in my mother’s womb. I praise You, for I am fearfully and wonderfully made. Wonderful are Your works; my soul knows it very well.” This doesn’t say that we have value because of our job or what we do; it says we were born having value. We are made in God’s image, and He only creates beauty for the world. I think it’s very powerful knowing that even before ever doing anything in the world we have irreplaceable value. Just ask a mother of a newborn baby; she will say that her child means absolutely everything to her, and that is merely for existing, it isn’t anything he has done to make her feel this way.

I am a firm believer that everyone has a purpose in the world and can make a difference in a way that no one else could. Just because you are bedridden or need to be taken care of absolutely does not mean you don’t have value in the world. You have qualities to offer people that make you absolutely irreplaceable in their lives, so we need to stop telling ourselves the lie that we aren’t as valuable because we are different.

On the other hand, I understand the ache that is in your heart for the opportunities you have missed and feeling like some of life has passed you by. I don’t have the resume I would have had if I hadn’t gotten sick, and there are a lot of experiences I missed out on. It’s weird listening to my friends all talk about what they’re doing at work and how comfortable they are there. I still remember working at the magazine’s office like it was yesterday, but I also think that experience was so different because you’re the lowest on the totem pole. Dealing with an illness does teach you what is important in the world, though, and gives amazing perspective people often don’t have until much later on in life. It teaches you to hold on to all the amazing blessings you are given, because sometimes they can be fleeting, and to be thankful for the people closest to you. It teaches lessons of patience, hard work, and resilience. You learn what it’s like to be empathetic with people, rather than just offering sympathy, and you are given an opportunity to be a light for others who go through the exact same things you deal with on an every day basis. Chronic illness builds beautiful warriors who have such important lessons they need to share with the world.

I understand questioning your worth as much as anyone else with a chronic illness, and I am right there with you trying to find my own purpose. The words I wrote on this page make sense to my brain and I know that my life has incredible value, but my heart sometimes has a hard time making the connection. I feel lost in a big world that doesn’t understand me, and I am getting swallowed up in the lies I tell myself at night. Being sick has taught me I’m a fighter, though, and I’m not going to stop searching until I figure out what I’m here for. Deep down I know I have an important role in the world. I just might take a little longer to figure out what it is and that’s okay.

Choosing A Season Of Joy

May 22, 2018May 22, 2018 ~ kristalauren ~ 4 Comments

I’m baaaaack! A lot has gone on in the week and a half I took off, but I’m ready to write again and update you all on some new developments.

It’s been crazy rainy lately and my POTS symptoms seem to get aggravated during changes in weather. Something interesting about POTS is that it affects a bunch of important organs, and has trouble finding homeostasis when even minor changes are introduced. My physical therapist takes my blood pressure and heart rate every single session — before and after and sometimes during my workouts — and it’s crazy to see that whenever I feel symptomatic my blood pressure is super low, and my heart rate is higher than usual. One cool thing about people with chronic illnesses is that we really know our bodies well. I can almost always pinpoint what is physically wrong with me because of the way my symptoms are behaving. We are going to start looking at the barometric pressure and my blood pressure throughout the day, just as a little test to see how they compare since both of us have noticed this trend. I can’t wait until POTS has been studied better and we can just look up a million and one facts about it, and one day there can actually be a cure.

Which leads me to my next point. I have been trying to be really cognizant of the blessings I have in my life lately. It makes every obstacle a whole lot easier to tackle, and I have felt more peace and joy by looking at the great things God has given me, rather than focusing only on the pain or discomfort. Today, for example, I saw a sweet little bunny outside on our front lawn. He was eating part of our flowers, but I sat and watched him until he was ready to leave before I walked past him. While I was sitting on the porch I saw a little red robin fly into a puddle next to our yard, and he started to fluff his feathers and bathe himself. These two little moments made my heart so warm the rest of the night.

As far as wedding planning goes, we keep making slow and steady progress. Robert and I got our wedding bands this week and they’re absolutely perfect. I keep putting mine on every time I go to his house because I love it so much! I am super sentimental, so I love that he picked everything out for me, but it’s also just so me. I love his too, and I think he looks super handsome with a wedding band. I wrote a little message to him in it so he’ll always be reminded of how I feel when he looks at it. 🙂 Despite all the stress of planning, I keep realizing how fast this time is going by and reminding myself that the primary feeling of this time of engagement should be joy. We have four months to go as of today, and I am so, so excited.

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My Resolution To Be Fearless

April 17, 2018 ~ kristalauren ~ 15 Comments

We are over 4 months into the new year and I decided to reevaluate how I am doing on my resolution to fear less in my everyday life. I wouldn’t quite say I am failing, but I’d give myself a “C” on this front, and I am not okay with that.

Having a lifestyle blog for anyone in the world to read is a little nerve-wracking, but the fact that any of my friends, family, and acquaintances can read about some of my deepest feelings and thoughts is a whole lot scarier than strangers following along my journey. My best friends know what kind of beautiful, fearful, and thoughtful desires are in my heart, but putting it on paper for those who don’t know me very well makes everything feel a whole lot more intimidating. Ink is permanent and words are sometimes interpreted by readers differently than the writer intends.

I know people like to talk about what others are up to sometimes. I do think about 99% of my readers are kindhearted amazing people who genuinely want what’s best for me, so despite having a good number of readers on this little online space, I believe it’s safe to share my heart with you all. I also know how easy it is to make snap judgments about others on social media, though. This blog showcases a small piece of my life, despite my best efforts to share meaningful things with y’all, and it can be difficult when friends make an assumption based on one, three, or a dozen little posts from a couple days of life. Feelings can be long and drawn out or incredibly fleeting, and I write a lot about both.

After thinking about it a lot, I’m not going to say I’m done with being afraid — because I’m totally not, and there will be times I won’t share a lot of what’s going on in my life — but I am going to use the next few months to put a lot out there and cross off some of my goals without worrying so much about what other people might think. I will continue to work to “fear less” every day so that one day I might be able to call myself “fearless” in pursuing my dreams.

To The Creatives Of The World

February 20, 2018 ~ kristalauren ~ 9 Comments

Your work matters too.

Having a chronic illness makes me so, so thankful for people who are different than I am. I appreciate the people who can handle blood and unhinged joints, and those who have brains that work for chemistry and biology. I’m not wired like that; I enjoy using my hands to write and create stories. I like painting metaphorical pictures for people, and I love resurfacing feelings from my heart and putting them on paper for others to read and relate to.

Something that really kept my spirits up when I first got sick with POTS was watching The Food Network and reruns of The Office. Laughter is often some of the best medicine, and despite not being able to do very much physically, I was able to laugh and dream. I learned as much as I could about food and health, and I lived each moment in the present as the room spun in circles around me.

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Every chapter of my life has included a soundtrack. I hear an old favorite song and it takes me back to a memory. I often do my best writing while I am listening to music, and will play a song on repeat until I have spilled old feelings on the pages in front of me. Despite not having the same ones anymore, I have a perfect memory for feelings. I know them all so well and even though I can’t remember dates, numbers, or physical details, I always remember how my heart felt about something. The best part about my writing is that it strikes a chord with people. With each blog post I get messages about how someone could relate to my own thoughts and feelings, and I take a lot of joy in knowing I can make others feel less alone by sharing my life with them.

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There are a lot of people in the world who get credit for their practical work, but I think creative people sometimes get left out of the thankfulness. I’ve written posts about how great I think people like doctors, physical therapists, nurses, and researchers are — without them I would be a complete wreck — but I’ve conveniently left out the people I understand most. The artists, the writers, the actors, and the comedians who all make life just that much brighter and more beautiful. The world is a really cool place because we have such a vast mix of humans who care about all of the other kinds of people. Without the left brains we wouldn’t be able to fix painful everyday problems, and without the right brains we wouldn’t have all the entertainment options we do. Both types of people bring more joy to the world, and we are all are a piece of the puzzle that makes for a happier society as a whole. No matter what your talent is, use it to make the world a better place.

Today’s lesson: Just because you can’t cure sicknesses or fix things doesn’t mean you aren’t important to the world. Laughter and bringing joy through the form of creativity and entertainment is a very important job. Keep practicing what you do best and giving back to the world with your own unique talents.

I’d Like To File A Complaint

February 10, 2018February 10, 2018 ~ kristalauren ~ 6 Comments

Do you ever find yourself really annoyed because you find yourself complaining about something really trivial like being stuck in traffic or not having any milk keft in the fridge?

That’s how I feel today. I went to a concert last night at my alma mater, and my lower back is k i l l i n g me. I think I hurt myself from standing too long and not wearing the proper shoes (read: sneakers), which sounds ridiculous but is life with EDS in a nutshell.

Really, though, my brain is functioning well, it’s rainy and I don’t feel super symptomatic, and my heart is content. My main issue is that I am medium-grumpy today. The pain is getting on my nerves, and I feel frustrated that every time I do something fun and different I have to take it easy for a few days after, while my friends can keep going and going without any problems. I am annoyed at my body for not just being normal — the way it used to be — and I hate feeling like a grandma at 27. Everything takes so much planning, and I turn down certain plans that I want to do, just because I have to weigh how much I have going on the entire week, rather than just a single day.

So, since I am bitching about a million and one things right now, I want to take a minute and realize what I should be thankful for.

I can get up off the couch and walk around. I have feet, legs, and arms that all work. My heart works twice as hard to keep me alive, but it’s pumping and keeping me going! Most of my organs are a bit goofy, but they are all working overtime to make sure I can keep living, and I am so, so thankful for that. I have a wonderful family who loves me, the best fiancée in the world, and amazing friends. I am doubling my family this fall, I am not allergic to chocolate (I count this as a blessing, as I developed a bunch of food sensitivities as an adult), and I have a roof over my head and never go hungry.

I could go on and on about more beautiful things in my life. Dogs make up a great number of blessings, and sunshine, birds, butterflies, and heat are just a few more. Candlelight, snuggling, soft blankets, The Office, country music, buttercream frosting, gentle massages, writing, decaf coffee, warm memories, Pinterest boards, glitter, loved ones’ sweatshirts, snail mail, flowers, dog tags, and a diamond are just a few of the beautiful blessings life has given me.

As much as I want to complain today, I am going to allow myself a minute of being annoyed, and then just let it go. My pain isn’t an 8 or a 9 today, and I can handle everything that I have on my plate. I just have to turn my frown upside down and enjoy the simple pleasures until I can go out into the world again and take on the next adventure.

Today’s lesson: The next time you want to punch a wall because you’re frustrated about something, take a few seconds to count your blessings. It helps put life into perspective, and makes you realize it’s an enormous waste of time to be grumpy when you can learn to be content instead.

The Greatest Part About Love in Our Twenties

October 12, 2017October 12, 2017 ~ kristalauren ~ Leave a comment

Something that makes me really, really happy about being in my mid-twenties is all of the love that I see around me. I’ve been to so many weddings this year alone, and there hasn’t been one I haven’t cried at yet. I think my heart is just so filled with joy that it uses tears as an outlet so I won’t explode.

As you can tell from reading just one page of my writing, I am a hopeless romantic. Honestly, even the people I never really knew well in high school getting hitched makes me giddy, as I just feel so excited for what their future holds.

Love in our twenties doesn’t start and end with weddings and marriage, though. Just because some of my friends are single doesn’t mean I am not equally as happy for the love they have in their lives. I see people who are in love with travel, in love with their job, and in love with sweet puppy dogs. There is love in family reunions, in blossoming relationships, and love for tiny little babies.

We are all in such different stages of life at this time. I predict by the time we’re all in our mid-to-late thirties things will have changed and we’ll all be a little closer to one another again for a short while, however ever since high school has been thrown behind us our lives have all continued to change more and more drastically.

Just because you are on a different page of your story than your friends doesn’t mean your life and experiences aren’t as beautiful or important. Your time will come with a romantic connection, and just because you don’t have your dream job now doesn’t mean there aren’t greater things to look forward to in the future. Keep pushing forward and enjoying the life you were given right now. Not everyone is lucky enough to make it to their twenties. It is hard trying to figure out how to be an adult and adjusting to so many changes, but I think it’s a lot easier when we realize that none of us are truly alone. We all struggle in one way or another, and even if life looks perfect for someone from an outsider’s perspective I promise you they’ve had something that has been a challenge for them. None of us are exempt from pain or suffering, but the great thing about life is that none of us are exempt from love if we welcome it into our life.

Instead of worrying so much about what you don’t have, I challenge you to make a list of the things you are thankful for. On days I am in more pain than usual I make myself create a list of 5 things I am thankful for, and that often creates a snowball effect and I see just how many blessings God has given me.

The 5 Love Languages For Dummies

August 20, 2017August 20, 2017 ~ kristalauren ~ 3 Comments

If you’ve followed this blog even just a little bit you’ll know I really value the 5 different love languages. I think they can be a game-changer in any relationship — romantic or otherwise — and if you know how to use them correctly they can make the world a much brighter place. Loving someone in a way that speaks to them will make your heart warm and fuzzy, and helps people you care about feel like they are important to you.

I know that every love language doesn’t come easily to each person. My heart has always been one that feels strongly, and I’ve found as I’ve gotten older that every love language is really important to me. I feel fluent in all five, and I wanted to share some fun little ideas of different ways to love someone using their love language. This week I am going to be focusing on the 5 different love languages. Please feel free to comment other ideas that my readers can use for each love language, and take a minute to discover what your own love language is by taking this quiz.

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The last time I took it my top love language was quality time, followed closely by physical touch. My love language score is really interesting because instead of heavily leaning on one thing, I seem to really enjoy a nice balance of all five love languages. I didn’t have a hard time choosing between the options for the quiz, yet I still had very balanced results.

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This is kind of crazy because my entire life has had “gift giving” towards the top — and it’s still one of my favorite ways to show people I love them — but ever since Robert and I started dating things have shifted a lot. Don’t get me wrong, I still love little presents and surprises and really cherish every little thing he gives to me, but I am kind of floored that other ways to love have taken precedence over that. My favorite thing in the world is spending time with him, and if you can add holding hands and a few of the other love languages into a date with him that’s my little taste of heaven.

My heart feels warm and fuzzy when any of these languages are spoken to me, so I’m stoked to write about each of the different LLs this week. Stay tuned, and I would love to hear about what makes you feel loved in the comments!

Putting Pen To Paper

March 29, 2017 ~ kristalauren ~ 3 Comments

One reason I think my writing sometimes speaks to people is that I feel so deeply. I sometimes joke that my feelings are as strong as Taylor Swift’s, but I think creative people are often just wired like this.

When I posted my story about forgiveness the other day, my friend Kristie said something that resonated with me. She said that I know how to put words to feelings. This has actually been something that has scared me in the past because I do think I know how to put pen to paper and explain the way I feel about things. I’m not extraordinary at a lot of things, but I definitely know all about feelings. On top of that, I’m not so scared about what people think anymore that I have trouble posting my intimate thoughts.

So, why is this a scary combination? Because I’m afraid of what God has in store for me. Writing and openness is a gift, but it’s terrifying because I don’t want to go through the hardships it takes to relate to others. Now that I’ve been through some of the scary stuff — like depression and chronic illness — I love that I can share my stories to help others, but I want it to end there. I enjoy writing about love and exciting twentysomething things and want to do that instead of writing about the things that hurt. I don’t want to ever have to write about how heartbreaking a deployment is again. I don’t want to deal with illness or loss anymore, and I don’t want to ever hurt deep down to my core ever again.

I know life isn’t perfect and that we’re meant to hurt sometimes in this world. Some people have it harder than others, and often times life is absolutely not fair. There are ups and downs, and nobody in the world has a completely easy and constantly fulfilling life. We all struggle, whether it’s with something catastrophic or minor stresses. As long as you’re alive pain is inevitable, but the way we deal with it and use it to lift others up is what really matters. The message I really want to get across in this is that life and love is worth the pain we have to deal with. You always have someone who loves you (And if you don’t feel that way, please message me and I will absolutely be there for each and every one of you!), and you matter in this world.

Today’s lesson: Your pain and heartache can be used for good. Sometimes you’ll never know why something bad happens to you, but other times you can look back and realize the purpose was to help you grow. Having a chronic illness has made me more empathetic, kind, and compassionate than I ever was before. Dealing with depression has given me new insight to how others might be hurting and makes me want to write about my past and my feelings to help others feel less alone — and to show that even the most heartbreaking of things can be overcome. I still don’t have everything all figured out, but I am trying to use my pain and heartache to connect with others and wrap my readers in a gentle, virtual hug. You may not know why you are struggling today, but please always keep fighting. You never know who you might be impacting with your life and what kind of incredible plans God has for your future.

Comparison Is The Thief Of Joy

February 9, 2017February 9, 2017 ~ kristalauren ~ 6 Comments

Yesterday I shared a pretty personal post to my Instagram account. This isn’t a particularly new thing, but it is always scary putting your heart out there for the world to see.

Something I am going to start talking about a little more on here is body image. I have been so content with my body image for the most part since my junior year of college, but there have definitely a few little bumps along the road, yesterday being one of them.

I’ve had an overwhelming two weeks with a lot of sickness (like, normal people colds and such — not only my chronic illnesses) and really gotten off my normal POTS recovery schedule. Missing a day or two here and there is alright, but a large collection of days? Not good.

So not only was I starting to feel worse, but I started getting inside my own head and letting my mind bully my body. Since day one of getting sick I made the decision to be kind and gentle with myself, take one day at a time, and not compare myself to others. Theodore Roosevelt was spot-on when he said,

“Comparison is the thief of joy.”

I knew that comparing the new life I never wanted for myself — having a chronic illness — with my friends who were going out into the world and getting their first post-college jobs and apartments would only be detrimental to my health. Rather than moping at home about the death of my shiny new dream job at Seventeen magazine I decided to focus on the things I could do. I could watch The Food Network and learn to cook, even if my body wasn’t actually up to cooking yet. I could write short blog posts with my dictation software. I could call my grandparents and make their day a little brighter; I still had the ability to be there for my friends and family. So those were the things I focused on.

When a handful of my friends started doing a bikini body workout I felt a little left out. Not that it was their fault; they would be happy to have me on board, but I am physically unable to do that kind of exercise with my new collection of illnesses. My Instagram feed and Facebook page began to flood with photos of weight lifting, sports bra before and after photos, and small digs at different body types. After a short while it all started to get in my head. Since I got sick I have not been able to do intense cardio workouts (I would faint pretty quickly), and I can’t lift more than a couple of pounds. I lost the muscle tone I was used to having my entire life, and I was the person so many of the girls would complain about being online — the before picture… And I absolutely cannot help the way I look.

This got me thinking more about the culture we live in. When did we start putting our self-worth in the hands of others, and why do we listen to the lies they tell us about our bodies? What exactly is the perfect body and why do we work so hard to change our physical appearance, but forget about changing our mindset? Being healthy is a wonderful thing, but appreciating everything your body can do at every single stage in life is incredibly important. Loving yourself no matter what your shape or size is, and realizing that your worth isn’t dependent on the body that carries you is an important factor to being content and secure in yourself.

It sucks that we sometimes question our worth because of something as minuscule as the paint job on our outer shell. I genuinely think every single person I meet is beautiful in his or her own way. I can come up with a long list of amazing things about a person if I get to know them. Just ask my friends; odds are I have written them a letter (Or a hundred) about what a great person they are. Why are we so much harder on ourselves than we would be on a friend?

There is absolutely nothing wrong about working out and taking care of your body, (It’s actually a great thing!) but it becomes dangerous you make yourself sick by striving for perfection. I want to be someone people think of when they start to question their own beauty and self-worth. I want to serve as a reminder that it’s not at all about what is on the outside, but rather what’s on the inside that really matters. It may sound corny, but kindness is what counts, and the way we make others feel about themselves speaks volumes above how many “likes” we get on Instagram or whether or not we look like the people we see on television, in magazines, or on the runway. Once we get past our flesh and really dig deep into our souls we can make a lasting difference in this world.

My Shade Of Blue

October 16, 2016October 16, 2016 ~ kristalauren ~ 5 Comments

I have a disability.

Growing up I never would have thought I would hear those words come from my lips. I was always an exceptionally healthy individual; I exercised very regularly, ate well, and excelled academically.

Even in the very worst points of my illness I wasn’t able to comprehend that this word is attached to me now. I don’t have a normal life anymore, and I do need a lot of help with tasks that most people my age wouldn’t even think twice about because they are so mundane. I have to tell myself this over and over again to understand that asking a friend to carry a “heavy” water bottle will not make their arms hurt for days after or that having someone drive 30 minutes to see me isn’t going to bring them any sort of physical pain like driving more than 15 minutes down the road does for me. This is a difficult concept to grasp after living the way I have been for three years now.

When I first got POTS it came with an electric blue handicapped parking pass. This was to accompany me everywhere. I took it to my doctor appointments and to the gym — the only two places I could muster up enough energy to go to when I first fell ill. I was determined to get better, and although I wasn’t able to go out with friends, I would force myself to go on these necessary trips with the hope of having a normal life again one day.

My mother lovingly called my handicapped pass my “VIP pass,” but my brain couldn’t comprehend that this was something that was okay for me to use. I was so used to being able to do everything by myself and having an independent lifestyle that when my working body was torn away from me I didn’t know how to react. I felt guilty using the pass, but when I didn’t I would often feel too dizzy to walk to the back of the parking lot and someone would have to come pick me up. I had moments when I had to lie down in the middle of the parking lot so I wouldn’t pass out on the hard concrete and get sent to the hospital again because of a cracked head or something. I remember my heart freaking out on me so many times while I was merely trying to decide on something like whether I wanted to try vanilla or plain almond milk. I would lie down in the middle of the grocery aisle and put my feet on a low shelf to get the blood flowing back to my brain (Hence, the “postural” part of POTS). The girl who was literally passing out from just standing up felt like she couldn’t label herself as disabled.

A lot of this had to do with my chronic optimism and hopefulness that I would one day be better. The other half, though, had to do with the way I thought about disability. The handicapped pass says it all with the picture of a wheelchair as the symbol for the disabled. I do not look like someone who has a physical disability. I look like an average run of the mill girl you’d see on a college campus or studying at Starbucks. If anything I actually look like an athlete, as I am tall, thin, and wear my sneakers almost everywhere I go (They’re a lot easier on my knees than any of the cute boots or heels I loved wearing just a few years ago). I do not look sick. You absolutely cannot see my pain; even doctors have to feel different parts of my body or rely on complicated tests to see that I’m not just an average twentysomething.

I’m always surprised when people tell me they’re “glad I’m feeling better” when they see pictures from photoshoots or nights out with my friends. A picture might be worth a thousand words, but without the context behind the photo it’s impossible to get an accurate story. The story behind this photo that my friend Audrey took would be about how blessed I felt to have a “good day.” It would include that I had a hard time turning my neck for some of the photos, and trying to overlook the sharp pain in my arms and shoulders so that I could have a fun day with my best friend. Despite some pain and difficulties, this is an overall happy photo for me to look back at.

This photo tells a different story. It was taken two years ago by my cousin Kristin. A bunch of my relatives were visiting for Thanksgiving and since Kristin is a photographer, we decided to take a few family photos outside. I was freezing and wore a giant puffy coat until we got to the bridge across the street from my house. My head was spinning, so after a few shots I shivered all the way home where I promptly went to my room to take a nap in hopes of sleeping off some of my POTS symptoms. I didn’t get to help make the dessert — one of my favorite Thanksgiving activities — and I missed out on a lot of quality family time because I wasn’t feeling well enough to sit around and visit with everyone. I stayed in my room much of the visit, sleeping or watching Netflix, as there wasn’t a comfortable place for me to sit in the living room with my family. Even sitting up can be exhausting with POTS, as the blood rushes away from my brain and makes me dizzy.

I still don’t think of myself as being very different than anyone else. I have been sick for so long now part of me feels like my life has always been like this. I don’t really remember what it’s like being able to go to a store by myself without planning where I can get water with electrolytes, as I cannot carry my own water bottle for more than a few minutes at a time. Sometimes I feel like the rest of my life was a beautiful dream; I remember so many of the good parts of not being sick that I almost glorify regular life now. I think back to being able to go clubbing with friends and feeling carefree rushing around the streets of New York City. I remember how amazing running felt and miss the burning in my lungs from training out in the cold, crisp fall weather.

I remember how life was before I got sick and sometimes wish I could go back and fully enjoy the time I had. I wasted so much time worrying about the future and my plans that I didn’t even realize that whether or not I like it, I might not be in control of my own life — at least to an extent. I can’t work, and I act like going to doctor appointments as often as a full time job is a normal thing. All of my college dreams were shattered the day I got sick. I still do dream of being better one day and being able to write for a living. I want to be independent again one day, and I would love to be able to train for even just a 5K.

You can’t see my disability, but it’s there every minute of every day. Having POTS has been a great lesson to me that just because someone looks healthy or looks happy doesn’t mean that they are. Looks can be deceiving. You never really know a person until you hear their story.