From Girlfriend To Fiancée

Wow, the past few months have been crazy in the best way.

Robert and I got engaged in November and I had plenty of time to breathe and enjoy our new titles as “fiancée” and “fiancé” (Side note: did you know that the word differs in spelling for a man and a woman? Two “e’s” mean the word is for a female, and just one makes it male). Now that I’m in month five of being engaged I want to tell you all how everything has been and what kind of advice I have for people when they first get engaged too.

First, one thing I did that I would absolutely do over and over again is that I kept the engagement off social media for a little over a week. It was so special having this little secret with Robert and all my loved ones, and it made that time so memorable and easier to live in the moment. Rather than getting hundreds of calls, texts, and well wishes online, we were able to hold hands and be quietly excited at the thought of getting to marry each other one day in the near future. It felt a lot more intimate and all of the new changes had time to sink in before announcing our new status to the world.

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Second, I recommend actually searching for venues after taking a few weeks to let everything sink in. My initial response to the dozens of “Have you set a date?!” question was, “I am just taking some time to enjoy being engaged.” While that is all fine and dandy, I knew I wanted to get married in the fall. We got engaged in the winter, and wanted a fall wedding. Had I started right away I would have had about a year to plan, whereas I knocked off about a third of that to just sit back and relax. Luckily, everything on that front has worked itself out and I’m really happy with the way our plans are materializing, but the Washington DC area is super competitive, even in the wedding industry. If you want to get married on a certain date or time of year, you should keep that in mind while figuring out how long you are going to be engaged and when to start planning.

Third, there is no right or wrong timeline. Some engagements are short, others are long, and there are a million in between. Figure out what you think is right, then just go for it! Planning such a big event is definitely a new and unique challenge, but it’s also a lot of fun once you stop dipping your toes in the water and just jump into planning. Luckily, all of the research I’ve done in college and assignments I had at Seventeen are really paying off, because it takes a lot of work to find the right vendors to create a big event like this.

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Finally, enjoy second of being engaged and make sure to still go on date nights and do things outside of planning your wedding. Time goes by so fast, and before you know it you’ll be a husband or wife instead of just a fiancé(e)!

Marks In Time

A lot can change in a year.

Time is a funny thing because as intangible as it is, it sometimes feels very concrete. There are certain things that make time more significant. You know both college and high school are going to last 4 years, your birthday will be around again exactly 365 days from the last one, and the Christmas season is every 48 weeks or so. Having a chronic illness makes time a little fuzzy sometimes, though. I have had POTS since August of 2013 and can pinpoint different phases throughout my journey, but it feels weird that I’m coming up on five years now. I have been fighting for my health longer than the time I spent in college, which is super weird. When I think about going to Mason I have such different memories from each year I was there. When I was a freshman I was timid and shy. I didn’t feel like I had a place I belonged, and I left campus to stay with my family just about every other weekend. I liked my classes and had a couple of really close friends I would keep for the rest of my life, but I was still figuring everything out.

My sophomore year was a blast. I made so many new friends, and I had a group of people who felt like home. I made friends with the girls I would call my roommates the next year, and I was an editor for the school newspaper. I didn’t find as much confidence with writing until later in college, but I looked forward to every day I would spend in the Broadside office with all of the other aspiring writers. Sophomore year was spent finding myself, and learning what I wanted to do the rest of my time in college.

Junior year was probably my favorite. I loved feeling secure with some of the best friends I could ever dream of, and had a great balance of work and play. I turned 21 that year and will never forget that birthday. I waited to drink until I turned 21, so all of my friends crammed into our little apartment living room to celebrate with me. People brought six packs of different things to drink, but I stuck with a cherry Smirnoff Ice. I was surprised it didn’t taste very alcoholic, and took my time sipping on my new favorite drink. That year we spent long nights dancing at the bar down the street every Thursday, and still had the energy to go out and explore restaurants and museums on Friday and Saturday.

Senior year before moving to New York is a blur, but my last semester of college spent in the city was one of the best memories from those four years. I had my fair share of adventures, long hours working overtime in the office, and despite blocking it out most of the time, I had my share of lonely nights in that little shoebox apartment on the eighth floor. New York was definitely an enormous highlight of my college career, and I’m still so thankful for each and every memory I gathered from that time.

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My mom took this picture of me my first month being a New Yorker. I felt so at home rushing around the city in my little dresses and tights, and fit in with all the editors at Seventeen by living on coffee, books, and cupcakes.

Do you see how easy it was for me to create four years of my life?

It hasn’t really been like that again until recently. The first few years of getting sick really blur together. I have a little bit of a timeline I can create, but it isn’t the same concrete, certain one I have from every other year of my life.

I got sick and went to a million different doctors. I had my heart hooked up to echocardiograms, holter monitors, and got tested for diseases I had never heard of. I watched The Food Network, then I watched The Office, then even later I started a new series called Pretty Little Liars. I went to the local shopping center with friends and found myself lying on the lobby floor of the movie theater to keep from fainting. I went home and cried, and wondered why I was the person God allowed to get sick. I remember nights of lying on the couch and having conversations with friends about the outside world I no longer felt a part of, and wondering aloud if I would ever be able to have a normal twenty-something life again. I remember getting my first job while I was home sick, then having chronic, debilitating pain from using my arms too much. I was diagnosed with Ehlers Danlos Syndrome, and had to stop doing the one thing that made me feel kind of normal and independent.

I remember moments, but I have no idea when they happened.

I also don’t know when I started getting better, as it’s been super-slow, but there are a few things that offer great markers of healing. One year ago my mom hosted a Bunco party at our home. She always takes the month of February, and I often get invited to come play with her group when it’s held at our house. Bunco is essentially a game of rolling dice and giving an opportunity to catch up with friends. Last year I remember finishing the game and going upstairs and feeling heartbroken at all the pain I was in — just from rolling dice for an hour. My pectoral muscles were sore and ropey, and my shoulders and arms burned with sharp, constant pain. I regretted taxing myself so much for a game, but I also wondered how something so simple could cause so much of an issue. It wasn’t normal, and I hated having to choose between living my life and feeling good. 

She hosted this same party again last night and I got to attend. I am sore and by the end of the night I was glad to be done with the rolling motions, but today isn’t an 8 or 9 on the pain scale like it was last year. My physical therapy sessions are so beneficial for my health, but I will be able to make it until my Friday appointment without trying to hold it together while I’m reeling in pain. I’m more sore than I am on an average day, but I don’t feel like I’m going to have a complete breakdown from being in pain. I can easily handle a little bit of soreness and as long as I take it a little easier today I will make up for everything with my stretching and workouts. This is proof that despite relying heavily on physical therapy and rest, I am making progress.

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Today’s lesson: Even if you feel frustrated because something isn’t changing, taking a look at the really big picture and having little mile markers is so helpful for keeping spirits high. I still may have a long way to go in being normal again (And maybe I’ll never quite get there), but any kind of baby steps I can take is still progress. I’ve already learned so much through my journey, and I trust God to be with me every step of the way. Staying positive and remembering blessings throughout every step helps me have a thankful heart. My path has helped me become more empathetic, kind, and understanding, and it has led me to my new forever family member, which is absolutely priceless.

Handicapped? Really?

One thing every single young chronically ill person will tell you about is the incredibly frustrating battle that comes with having an invisible illness. We are constantly trying to regain normalcy in our lives, but also have to roll with the punches through the symptoms our illness brings along for the ride. For example, I can’t do many of my favorite activities anymore — let alone even just be outdoors in crazy heat — however, I don’t like being different and asking for help, even when I need it.

Today I went to my alma mater to run a quick errand. I wasn’t feeling particularly great, but I told myself that it would only take five minutes and to suck it up and get it over with. I mapped everything out in my head and went to my usual parking space. It’s one of two handicapped visitors spaces, both of which are always available. I sat for a minute to prepare for my walk up the hill and grumbled in my head about how I wasn’t up to my heart racing today so to just take it slow.

As I began my miniature hike, my heart began to thud swiftly and hard (for those of you who don’t know, when POTSies even just go from sitting to standing our heart literally beats as fast as someone running a marathon… No wonder I’m always so tired!). I walked slowly and carefully up the hill and focused on each step so I wouldn’t trip — that’s just because I’m Krista and a little bit clumsy — it has nothing to do with POTS.

I smiled at two young police officers when I looked up, and as I passed by them I heard one say to the other, “Handicapped? Really?” with a snicker.

My heart stopped — then went back to racing even faster than before. For a split second I was shocked, then brushed it off as my imagination. I always feel embarrassed when people can tell I’m different, and I hate having any sort of extra attention. This makes me feel like people are staring sometimes, even when they’re not really paying too much attention. I had a gut instinct, though, that I needed to turn around when I got to the top of the hill. I wanted to make sure my car was going to be OK in the visitor’s spot and that I didn’t need a university parking pass to be there. Despite having parked at that spot a hundred times, you can never be too careful at my alma mater.

Sure enough, they were smiling and looking at my bright blue sticker with a little black device.

Great, I thought to myself, now I have to trek back down the hill to see what’s going on. 

I wasn’t in the mood to deal with confrontation, but I know how crazy our school was about ticketing, so I wanted to make sure I wouldn’t have any trouble when I came back from my meeting. Deep down I knew it was because of the way I looked, though, that the officers rushed down to check my credentials. I quickly realized that I hadn’t been imagining things with the officer’s remark, and that if he was gutsy enough to say that while I was right next to him, he might be confrontational when I chatted with him about my disability.

“Excuse me, can I help you?” I asked.

“We’re just making sure your pass matches up with your car,” one of the officers replied with a grin. “We know people often take advantage of these spots.”

“I have my DMV card, hang on,” I replied shortly. I wished I had called him out on making a snide remark earlier, but I honestly didn’t think a trained police officer would have been that loud and unprofessional about being so snarky. At least if you’re thinking that about me, keep it to yourself and your partner, don’t bring me into your little joke.

I didn’t smile as I showed my pass. Not smiling at someone when I’m interacting with them is actually one of the hardest things for me to do, but I felt frustrated that I was having to deal with this when I already wasn’t feeling great.

“Okay, good,” he replied. “Thanks. We just didn’t want you to be using grandma’s parking pass to get a better parking spot,” he said. “You know — so we can protect people like you who really need it,” he corrected himself.

Honestly, this part of the interaction bugged me a little, but I don’t fault people for saying goofy things like that anymore. I understand that it isn’t normal to see a 26-year-old who is disabled but looks healthy, and a lot of people haven’t even really had to interact with someone like me before.

The thing that bothers me about the whole ordeal was the way they went about everything. I completely agree that they should check to make sure I’m actually handicapped. People who use the stickers but don’t need them should absolutely get in trouble. The way they went about it was wrong, though. I shouldn’t feel like I am doing something bad by using a handicapped parking space when I need one, and I should feel comfortable using the resources that help make my life a little more normal. I already feel embarrassed enough when I have to park in one of those spots at Trader Joe’s and make three trips back and forth to carry $20 worth of groceries to my car without hurting myself. I hate that people stare at me to try and figure out why I am in that blue space, and I hate going grocery shopping with my mom and having people think I am a jerk for making her carry everything to the car by herself. I don’t want to feel like the people who are supposed to be protecting me are also going to give me grief about being a weak twentysomething.

I realize that the police officers were just trying to do their job, but I also know enough people in that field to know that there is a lot of sensitivity training so that they can be professional while they are on the job. I would have had absolutely no issues with them checking my pass — even right after I left my car — however, making me feel uncomfortable by being snarky loudly enough for me to hear was completely uncalled for. In hindsight after talking to a few people about it, the officer more than likely wanted me to hear his comment, as he waited until I was 200 feet from my car and right next to him, and thought he was catching me in the act of something I shouldn’t be doing.

I didn’t write about this to shame the police officer or have a pity party for myself. This is just such a perfect example that you never really know what someone is going through unless they tell you. I look fine, and if you stuck me next to a dozen other twentysomethings you would never guess that I was the sick one. I hope this story helps people be more gentle towards other human beings, as you never know what someone else is dealing with.

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Another reason I wanted to write about this to raise awareness about invisible illnesses is because not everyone with a chronic illness is as bold and open about their problems as I am. A few years ago when I first got POTS, my mom had to be my advocate because I couldn’t even stand without getting incredibly sick. People who are going through things like that should not have any extra obstacles that could easily be avoided, so I think it’s important for me to speak up about my experiences in hopes to better the lives of others who are chronically ill and don’t have someone to advocate for them. A good lesson from all of this is to be kind to everyone you meet, and never make assumptions based on the way someone looks. I am going to be writing a letter to the police department so that they can hopefully be better equipped to deal with others who are like me on campus.

Are You Still Friends?

Friendship is a two way street.

This is a lesson it took me years to learn, and to this day it can be a hard truth to swallow.

I talk to so many people who are frustrated about friendships that die when they stop putting in all the effort, and I can definitely relate. I’m love to communicate and find that keeping in touch is easy enough if you want to reach out to someone with a text or phone call every so often to see how they’re doing. Old friends tell me that they’re glad I’m good at keeping up with them, and I am happy to, as I genuinely care about how they’re doing and what’s going on in their life.

There are those friends, though, who never reach out if you don’t say something first. I don’t always think this means you need to cut them out of your life or even that they don’t care about you — some people are just incredibly busy and don’t have casual friendships as a top priority. I do think this often means they cannot still have a top space in your heart, though. You can care deeply about a friend who doesn’t put in effort to your friendship. You can still want the best for them and support them, but it’s important to make sure your heart knows what distance to keep the friendship at to realize your own worth.

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Here’s a good comparison. Would you want to date someone who never texted you first or gave any sort of affirmation that you’re an important part of their life? No! You deserve to be a priority in people’s lives, and if they can’t see how much you’re worth there will be other friends who will.

If some of your current friends don’t recognize that you are valuable enough to keep in touch with, there will be others who will. Just like the men who are waiting to date a girl like you, there are people out there in the world looking for a friend just like you, too. Keep each of your friendships as a treasure in your life, but if you feel frustrated about a lack of effort in a close relationship, spend your time on someone who will put time back into you. You are worth investing your time in people who are investing in you.

Today’s lesson: Not everyone has time to spend on a wide range of people and that’s okay. Don’t take it personally if you begin to realize some of your friends aren’t putting any effort back into your friendship. It likely has nothing to do with you and everything to do with their schedule and priorities. This is a really hard lesson to learn since it can feel so personal, but once you realize that there are other people out there who want to use quality time as their love language, finding the right friends becomes just a little bit easier. There are so many people in this world who would love to have your friendship; you just need to find the right humans to invest your time in.

Asking For Help

Part of me feels strange when I tell people I have a chronic illness — it doesn’t feel real that I am very different in a big, foreign way — but the other part can’t really remember what it’s like to be normal. It almost seems like the rest of my life was a dream, and it’s mind-blowing that I used to be able to jump out of bed quickly without blacking out or that I could carry my own backpack from class to class. I can remember what it’s like to run, but I can’t recall the feeling of independence that should have gone along with this privilege. Needless to say, I have had to swallow my pride a lot the past four years, and ask people for help.

I remember feeling incredibly uncomfortable when my Master’s class went to the university library and we were told to bring our bags because we wouldn’t be going back to that classroom. I panicked a little on the inside, as my dad always walked me to class early and picked me up late so that I could be discreet about getting help carrying my stuff, but I knew I would be in pain for a week if I didn’t ask someone to take my bag for me.

My face got warm as I approached one of the only guys in the class. “This is going to sound really weird,” I started, “but would you mind carrying my backpack to the library for me?”

I could feel my body turning the bright shade of red it seems to love so much when I am uncomfortable. I tried to think of something else — anything else — that would make my autonomic nervous system cooperate, but I ended up just coming to terms with the fact that I looked like I suddenly got a terribly bad sunburn under the florescent lights.

“Sure, no problem,” he interrupted before I could go into my spiel about why I need help taking a fairly light bag from one part of campus to another. I explained my situation quickly as he picked my bag off the floor, and was relieved when we shifted topics to chatting about English-related topics instead of my personal problems.

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Since that day I’ve gotten [a little] better at asking for help. I still have trouble vocalizing when something hurts unless it’s an unbearable pain, and I try to be as independent as possible, which sometimes results in injuring my muscles and joints further. I try to remember that everyone has something they need help with, even if it’s not the same thing I am struggling with.

Many of my friends have even become so great at automatically helping without me even having to ask; this blog has been an amazing platform for raising awareness for twentysomethings with chronic pain, and I think people understand a lot more than they would without reading about the experiences I have on here. Thank you to each and every one of you for reading and caring about the stories I have to tell. It means the world to me to have support from friends, both in person and for this little space on the internet.

Today’s Lesson: I always joke to my friends to “channel Krista” when they want to avoid a guy making a move on them on a first date since I was kind of a pro at that back in the day. Today, I want to encourage you to pull a Krista and ask for help when you need it, even if you’re afraid to. Whether you have a broken heart and need a friend to talk to or need assistance with a physical task, people are always a lot more willing to pitch in and help out than you initially expect. We all have different things to offer the world and ways we love to serve, and I’ve often found that when people can help another human being it makes them feel good as well.

Cyber Monday Shopping Tips

I love a good deal. Having a chronic illness is expensive — especially since it doesn’t give me enough time (Or energy. Or strength.) to have a real job. My catch 22 to this is that I absolutely love buying people presents.

I’ve found a few great money saving hacks for my fellow college and grad students, high schoolers, and whoever likes to save a little money. I figure even if I was rich I would try to save money here and there, as that leaves more to donate or have to spend on little treats that I don’t need!

First, let’s talk cashback. Cashback websites are all about paying you to shop. Yes, that sounds too good to be true, but no, it’s not sketchy. Here’s the lowdown: stores pay these companies to advertise. These companies keep part of that money, and pay you the other part. This kind of advertising actually works really well because even I’ve found myself going to sites that are offering a special cashback deal to see if there’s anything worth spending money on. Here are my favorite sites (And if you decide to sign up, use my links, as we each get bonus sign-ups for the referral!):

Top Cashback: This website is almost always the best one for cashback percentages. They’ll give you money into a Paypal account, Amazon gift card, or American Express rewards card. I usually use the Paypal option, as I just use it again for other online purchases.

Ebates: This website offers great referral bonuses, and they send you a check in the mail instead of the options Top Cashback uses, and often offers bonus offers along with the cashback (Such as a $5 or $15 incentive to shop at a specific store).

Who Should Use These Sites?
Just about anyone who does a decent amount of shopping online or if you’re purchasing something big like a computer, an iPhone, or a television! The purchases really add up, and the way I see it, these checks I get back can go into the “TREAT YO SELF” shopping fund.

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This picture kind of cracked me up because of how hard they tried to hide the numbers on this terrible looking credit card, haha!

Moving on.

Rewards and Subscriptions and Shipping — Oh my!

As I’ve mentioned before, I love giving presents… But I also love getting them, too! There are a few places I really love being a rewards member of, but I would encourage you to ask about any of your frequented shops having a program you could join.

Let’s talk Sephora. Ahh, how I love makeup. I have very high expectations for Sephora’s cyber Monday sale, despite them hardly doing anything for Black Friday (Online at least!). If you plan on shopping at Sephora more than twice this year, you have to join their Flash 2 day shipping. This is such a great secret on their website, and I don’t know how it isn’t really the talk of the town. Basically you pay $10 for free 2 day shipping for a year. A YEAR!!! Like, how could I not sign up?! I have purchased things as little as an eyeliner and gotten it shipped to my house quickly with the free samples they let you choose with any purchase. It’s seriously so amazing. This is the main reason I choose Sephora over Ulta now.

I’m not done with our Sephora conversation, though. Join their beauty rewards program ASAP! Not only do you earn free products, but you also get a gift on your birthday… And they’re usually really nice! This year I believe I will get a Marc Jacobs lipstick and eyeliner. I’m excited to try them out since his makeup is cruelty-free! My birthday is December 3rd, so I’ll definitely be back to talk about that if I love it.

Ulta does have a great rewards program too, as I feel like I’m always getting coupons in the mail. Sign up with the link above or in stores, and they will also give you a birthday gift during the month of your special day. This year I’ll be getting an Urban Decay eyeshadow, which is also a cruelty-free brand… Hooray!

FabFitFun is a new favorite subscription box of mine. I have some exciting news regarding this, but I’ll be sharing that a little bit down the road. Use this referral link to get $10 off your first box (so it is only $39.99), which is going to be kind of amazing. The thing I am most excited about is the Modcloth blanket scarf, which is going to be great to have all winter long. Robert’s family lives up in Massachusetts where it is absolutely freezing (though he assures me it’s “only a few degrees” colder than DC. A few degrees in the winter make all the difference!), so I’m definitely stocking up on some warm clothes for my visit this winter.

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Everyone will get a blanket scarf, necklace, and mug, along with a bunch of other full-sized products!

Not so into makeup or girly subscription boxes? A billion other places have reward programs, but I figured I would just touch on another favorite of mine — Starbucks! I love their mobile app, and get rewarded for all of my purchases. Not only do you get free coffee just for drinking coffee (Or peppermint hot chocolate if you’re a kid at heart like me), but you also get a free birthday drink and random deals Starbucks decides to send your way.

Lastly, my friend Robin has a company that works to help animals in need. She’s offering $5 off your purchase of $30 or more today only, so check out her website here! My favorite item is definitely the anchor toy for pups.

That’s all I’ll touch on today, as I feel like I kind of rambled, but these are some of my very favorite sites I use all the time. Feel free to let me know about others in the comments, or ask any specific questions and I’ll do my best to answer! 🙂

My Shade Of Blue

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.

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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.

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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.