To the People Supporting Me, From the Girl With the Chronic Illness

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Mom,

You don’t have to be sorry. This isn’t your fault. Finally having a diagnosis is the best thing ever, but there’s no reason to say “sorry.” I’ve felt this way for months, years, days. Nothing has changed. The only thing different is, I have a diagnosis. It’s something to be happy about. Yes, I cried. They were tears of relief and not knowing what is next. The days to come are going to be the same. I’m going to have good days and bad days. Now we can better treat my symptoms. Yes, I’m getting more symptoms and they are worsening. Please don’t be sorry. Don’t blame yourself for this. Yes, the doctor told us that since I didn’t have any kind of injury, it was genetics. And since you have been sick your entire life, you blamed yourself. This isn’t your fault. This is who I am, I’m learning to cope with it now.

Family members,

Thank you for all your well wishes and positive vibes. You don’t have to say the famous quotem “Get better soon!” because in reality, I won’t. What I have is life-long, hence the term “chronic.” I know you all mean well and want me to feel better. But please don’t say those three simple words. They are great from someone who has something that’s cure-able, but I don’t have that. I know you want me to be who I used to be, the happy, energetic kid at all the family gatherings. That’s not me anymore. That’s what chronic illnesses can do to you. Yes, all the family gatherings centered around food are going to be tough for me, but with your support I can get through this.

Old friends,

I know I’m not the person I used to be, thank you to the ones that stuck around. You all knew I was slowly getting a little sicker since you first met me, but you must have thought nothing of it. Until it took over my life. I’m sorry that I medical stuff was all I had to talk about for a little while. I couldn’t think of anything else to talk about. (The brain fog is real.) You left me alone for a while and I understand why. I was boring. I couldn’t go out and do “normal” college things. I’m sorry for that, but I hope you understand why I can’t do those things now.

New friends,

Thank you for ignoring my medical issues and pretending they’re not a thing. Thank you for understanding that I can’t stay out still 2 a.m. Thank you to the one person who understands all the medical stuff and will sit and listen to me complain about doctors and symptoms for hours. You all mean the world to me. You all knew that I wasn’t completely healthy when you met me, but thanks for sticking around when you didn’t have to.

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Why I Choose to Celebrate the Anniversary of the Day I Became Sick

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Two years ago today, I got sick – but today is a celebration. Let me explain why.

At first, I just wanted to figure out what was wrong with me. Then, I just wanted to get better. A lot of days I just want to be off meds and be “normal.” I also wanted to be able to do what I wanted, whenever I wanted. So many questions have gone through my mind in the last two years:

“Why me?”

“When will I get better?”

“Why did God choose me to get sick?”

“Why can’t the doctors make me better?”

“Why do we keep changing medicine if I’m doing good?”

“Why don’t people believe me?”

“Why do I get dirty looks when I’m in a wheelchair?”

“Why can’t they understand that it’s an invisible disease?”

“How long am I going to deal with this symptom?”

“Why do people makes jokes?”

“Is that ringing noise in my head this time?”

“Are those lights actually flickering?”

“Am I about to have a seizure?”

“What is happening?”

“Should I say something if I feel bad? I don’t want to make a big scene.”

I have honestly tried to block out most of the memories because they are too painful. There were so many days that I could barely function and I thought I was going to die. Many of you probably remember that I was homeschooled for a little while because things got so bad. I went from modeling to mottling.

I could feel sorry for myself and allow myself to get worse, or I could see the positive in my situation and move forward, which is what I choose to do. It sounds like a motivational speech, but there really are a lot of really positive things that have happened in the last two years because of being sick.

First, I learned who my true friends were. Yeah, it was hard to lose people in my life. But, I learned that the ones worth having are there for me when I’m too sick for school, will always call to check on me, will lay in bed with me while I get an IV even though they are terrified of needles, or will face time me to watch home videos with me just because I’m sad or in pain. I have gained the best friends in my life from getting sick, especially my very best friend in the world, which I could have never survived my worst times without.

To my best friend: I am thankful for you every single day. I truly wouldn’t have made it this far without you. I wouldn’t be here if it weren’t for your unconditional friendship. You are irreplaceable to me.

For the people who faded: I’m not mad. I understand that you just couldn’t deal with it, and I don’t have any hard feelings toward you.

Second, I learned how many kids there are out there who are hurting from diseases. I have met so many wonderful people and new friends with illnesses that I would have never met unless I became sick. Some days I can cheer them up, and other days, I need them to cheer me on. I have become an advocate of invisible illnesses and supporter for anyone who needs me by becoming a writer for “Card for Warriors,” which I wouldn’t know about if I didn’t get sick.

I have raised awareness to hundreds if not thousands of people. Not just about my illness, but all invisible illnesses. Everyone is fighting some sort of battle. Be there for someone who needs you, even if it’s just to check in and ask if they are OK. You might change their entire world with a single text.

Another thing I’ve learned is that I am stronger than I ever knew I could be, because I didn’t have any other choice. On days I struggled to get out of bed, I went to practice. On days I didn’t think I could walk, I went to school. You will never know how strong you can be until your body and mind force you to be stronger than you know how.

I’ve learned to laugh about everything because there is always something worth smiling about. Making jokes about the things I do and go through just makes things easier. I mean, who wants to be sad all the time when you can just laugh at yourself and move on? So what if I put my shoes in the laundry basket and my laundry in the fridge because I have brain fog? It’s still funny right? Also, can you say that you dance with an IV pole?

Most importantly, if I didn’t get sick and learn what really mattered in life, I wouldn’t have the most amazing guy that I get to call mine. It took being in a terrible place to understand that the guys worth having are there for you 100 percent of the time, not just when you can be “fun” and “cute.” I know without a doubt every single day that I wake up that he will love me and be with me if I am happy, hyper, and model worthy, or if I can’t get out of bed, and look like hell. I never doubt that he will be by my side. He is willing to take care of me when I need him to and sit through hours of doctors appointments. He knows my medication schedules by heart and is there every single time I need him, just because he loves me.

So, for all of the things that have happened to me in the last two years, I am thankful because I’m a better and more compassionate person. It sounds odd, but I wouldn’t trade them for anything. The best things in my life have come from getting sick and learning what really matters in life.

Today, please celebrate with me, for the better person I have become, and let my story help each of you to be the very best you that you can be. Be a fighter, be a giver, and be someone who loves with everything they can – because disease or not, none of us are promised tomorrow.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

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What It Means to Live With an Invisible Illness Like POTS

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Sometimes I spend hours trying to think of ways to explain to people what it is like to live with an invisible illness, specifically POTS, but then I stop myself and wonder why I’d even try and explain it because on the outside I am always going to look “normal,” which makes it easy to forget. That’s the thing about living with an invisible illness though – people forget. It’s not their fault and I don’t blame them for it, but they do. They forget.

***

POTS stands for postural orthostatic tachycardia syndrome. Try pronouncing that one out loud. Trying to pronounce postural orthostatic tachycardia syndrome is kind of what it feels like to try to explain what it is or how it affects those who have it to those who have never heard of it before. Hell, I couldn’t explain it to myself or doctors for almost four years and most days I still struggle with it.

Have you ever experienced one of those times where you stood up and said, “Whoa…I just stood up way too fast,” because you got a head rush and suddenly lightheaded? Living with POTS is feeling like this every time you stand up.

Or have you ever done the stair-master at the gym for 20 minutes and gotten off out of breath, your heart rate spiking up, and you needed to take a break? When you live with POTS, this is what it feels like every time you walk up one flight of stairs.

It feels like taking the elevator up one floor and having people stare at you silently (or even sometimes not silently) and judging you for being “lazy.”

Living with POTS consists of weird habits, like drowning your food in salt because the doctor says it might help you feel a little bit better. Or carrying around your 32 oz. water bottle everywhere you go. And when I say everywhere, I mean everywhere, even to the bathroom at work (gross). Or standing up and waiting 15 seconds before actually walking anywhere because you need to make sure your body isn’t going to stop working before you start moving.

It consists of canceling plans last minute because your body gave up on you out of what seems like nowhere and having to make up an excuse because “I just don’t feel well” doesn’t feel like it’s cutting it anymore.

It consists of leaving a conversation midway through to “use the restroom,” when in reality you just need to sit down because you can feel your legs starting to shake, the weight of bricks on your chest and your heart rate spiking up to 130 BPM (and that’s on a good day). Mix this with one of your biggest fears – passing out, especially in public – and you have the making for one anxious recipe.

It consists of seeing a flight of stairs and having to stop and think about how you are going to feel before, during and after you climb those two flights, which to you feel like a mountain.

It consists of having to plan around what your body might be able to handle, but even that will likely end up being too much.

It consists of seeing pictures of friends traveling, hiking or even just taking a long walk on a nice day and wondering when you will be able to enjoy life’s simple pleasures again.

It means that a good day is when you can grocery shop, clean your room and meal prep (while standing up!) – all after work!

It consists of going to doctor after doctor, specialist after specialist and being told, “Here’s what we can try…” but it may or may not – and probably won’t – help you feel better.

It means that, despite the amount of time you spend lying down, “relaxing” is something your body rarely does. Mostly because of horrible anxiety about everything going on with your body, but also because that’s just not how your autonomic nervous system works.

It means not being able to explain to people why your body is able to do something one day but not on another day because one of the only methods, even in the medical world, for explaining this is that some days you get less “spoons” than others. (Disclaimer: the “spoon theory” is actually a great way to explain to people what it’s like to live with a chronic illness to those who are looking for a way.)

It means having no idea how you or your body is going to feel any minute of any day.

It means trying to do everything in your power and using every last ounce of energy to appear “normal” to the rest of the world while on the inside you feel like your body is shutting down.

That is what it feels like to be living with an invisible illness, at least to me.

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Why I Used a Wheelchair for the First Time

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Recently, I made the choice to use a wheelchair for the first time, which was a pretty big decision and something I want to talk about. I want to start off this post by saying that choosing how and when to use a wheelchair is an incredibly personal decision, and this is only my own experience.

Why a wheelchair?

Ever since I realized there was a genuine health reason for me being in so much pain, and that I wasn’t being lazy, I’ve been trying to work around it. While I can manage my day-to-day life relatively well, trips away are a massive struggle. Last month, I had what should have been an amazing trip to London planned for my best friend’s 21st birthday — two whole days of sightseeing, shopping and shows. Obviously, with it being such an important birthday, I wanted to make sure she had an amazing time, and that me being tired and in pain didn’t get in the way.

Worries

It’s safe to say I had a lot of worries about starting to use a wheelchair. The practicalities: how do you borrow one? How do you steer it? Where are the brakes? The stigma: what will people think when I ask for one? And when I’m able to stand up out of the chair? And personally, admitting to myself that it was something that I needed on occasion, that it wasn’t a big deal, and that using a wheelchair for a special occasion like this wasn’t making a commitment for the rest of my life.

How did it go?

After chatting with a few friends and browsing museums to find one that rented wheelchairs, I decided to go for it. On arrival at the Natural History Museum I went to the cloakroom, signed a disclaimer, and 30 seconds later was equipped with a wheelchair. After a bit of figuring out how to fit me, my coat and way too many shopping bags in it, we were ready to go.

I started off being pushed, but the lack of control really bothered me, so I decided I was going to push myself which worked much better (after a few incidents getting around corners!) While my arms were so sore the next day, I think that’s something I’d get used to. Practically, it was better than I expected. People were on the whole really polite, happy to move out of the way, and I didn’t notice anyone giving me weird looks or anything. In terms of the museum, it was hard going; I couldn’t see quite a lot of the displays, and trying to find lifts (elevators) was mission impossible.

Overall though, it’s a big thumbs up for the wheelchair. Although it is not something I would want (or need) to use every day at this point, for occasions like this, where I’m trying to pack a lot of activities into a few days, it makes things so much easier. It means I can do so much more without the repercussions, and more importantly (for me at least) I can better keep up with others.

This story was originally published at Irish Dysautonomia.

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A Message From a 'Slow Walker'

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There is often a lot of talk about how annoying “slow walkers” are. I have always fallen into the “annoyed” category since God gave me long legs at birth.

When I was 22 I got sick with a chronic illnesspostural orthostatic tachycardia syndrome. It started off as a debilitating sickness. I could only walk about 12 feet without resting, and could only make the long journey up a flight of stairs to my bed once a day with the help of my parents and taking little breaks between climbing a few steps and sitting down to rest until I reached the top.

When I was finally well enough to go out of the house for a 15-minute errand to the grocery store it was a big deal. I felt like I had this tiny piece of normalcy in my life, even though I felt constantly dizzy and nauseous.

Wegmans was my number one choice for a field trip, and I wanted to see if I could go find a salty snack and chocolate bar while I was there. One salty snack, one sweet treat. That’s it.

I walked to the dessert aisle first, as it was closer to the entrance, and my eyes grazed over dozens of choices. The room spun as I tried to read new labels, and my body started to gently sway. I knew I wasn’t feeling well enough to stay in this upright position much longer, but I was determined to be normal again — at least for a few minutes. I snagged a bar I thought might be halfway decent and took each step to the popcorn aisle as carefully as I possibly could. I didn’t want to fall, and I absolutely was not about to faint in public for the first time — not today.

As I put one foot in front of the other I vaguely noticed the bustling around me. I felt mildly panicked as I began to realize I shouldn’t be alone anymore and that my heart was racing the way it does when I’m about to pass out. My eyes slowly scanned the aisle, and I couldn’t feel my footing anymore. My feet were still planted firmly on the ground, but my head was spinning in circles.

“What the hell is her problem,” I hear behind me. I turn, dazed, as a woman my mom’s age firmly nudged me into the shelf that held some sort of food I couldn’t quite make out. It wasn’t until I was intentionally lying on the ground (this is a tactic POTSies use to ward off some symptoms and feel a little better, hence the “postural” in “POTS”) to get the blood to flow back to my brain moments later that it all clicked. I was the one with the “problem.”

Tears welled up behind my foggy eyes. I had never been “different” before, and I wasn’t used to having a disability. No one could tell by looking at me that I was sick, but my body reminded me every second of every day that I was ill. The room kept spinning, but somehow I kept thinking.

I was a heavy mix of angry, frustrated, and devastated. Why aren’t people more patient? Why can’t we have some sort of label for the chronically ill so that people would know I need extra help? But wait, why can’t people just be kind to others in general and realize that you never know what someone else is going through by of the way they look? 

These are questions I never really thought about before I got sick. I am guilty of complaining to friends about “slow walkers,” moody waiters, and distracted baristas. Having a chronic illness has taught me the very important lesson that just because someone looks fine doesn’t mean that they are. People can have a hard time for a number of different reasons, and instead of making their life any more difficult by making snarky remarks or getting frustrated, we should all take a minute to practice patience and kindness. After all, even if someone doesn’t need it, there is never any harm in being kind to others and treating them the way you would like to be treated.

Sure, people can be frustrating sometimes, but is the hustle and bustle and rush of life really worth hurting another human? Is whatever you are rushing to really worth upsetting anyone over? I think the answer for most of us, if we sat down and thought about it, would be “no.”

This story was originally published on Single in the Suburbs.

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To My Professor Who Encouraged Me to Take Care of My Health

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I am, admittedly, a person who overworks myself, simply because I want to explore many different things all at once and experience as much of life as possible. I was an honors roll university student, leader, mental health advocate, author, and blogger. My life was rich and full, I was happy, and on my way to receiving a double degree in nursing and social work with the dream of opening a shelter in the future.

That was until, in my second year of university, as I soaked up the beauty of life’s wonders, my body also soaked up a large handful of chronic illnesses.

At the time, I ignored the symptoms to keep pursing school. While my seizures, syncope episodes, irregular heartbeat, critically low blood pressure, abnormal blood glucose levels, fatigue, chest pain, severe iron deficiency requiring infusions, and easily breaking bones refused to relent, I refused to acknowledge that I had a problem.

“It’s just the flu,” I’d say. Or, “It’s just a bad virus, it will pass.” I was a train wreck awaiting combustion, and all I wanted was to keep getting A+ plusses and checkmarks on my degree requirements list.

Then one day, I had a seizure in my class. Humiliated that 300 students watched me violently convulse and scream, I apologized profusely to my professor who had to cancel the lecture.

He replied, “The only thing you need to apologize for is if you don’t take care of yourself.”

I stood there stunned for a moment.

I realized that I couldn’t “be the sick caring for the sick.”

If my dream was truly to take care of others, how much more important was it to take care of myself first? Ultimately, I made the decision to take a break from school. I knew that if I kept going down my current path and pushing myself far beyond reasonable limits, I would only continue to suffer. I’d rather graduate a year later and be healthy, than graduate on time and be sick and miserable.

Although I had to say goodbye to many amazing professors, aides, and peers, those goodbyes means many more bright hellos in the future.

I am about two months into my break from school, and already there has been a massive upswing in my health. Because I took the time to see a myriad of specialists and undergo testing, I have greater diagnostic clarity now. During school, I had no idea what was going on with my body and didn’t want to pause my life to figure it out.

Last week, I was finally diagnosed with postural orthostatic tachycardia syndrome (POTS) and autonomic neuropathy, both of which essentially explain every symptom I’ve experienced this year. When I allowed neurology, cardiology, and internal medicine doctors to come into my life and take care of me, I found answers. With a very modified, strict diet, compression socks, as well as medication, my symptoms have subsided to an extent, and it’s only been a week! I can only imagine the improvement I will see over the next year as I dedicate it to my health and wellness.

Sometimes, the greatest lessons don’t come from a textbook.

So, to the professor who encouraged me to take a break from the books and take a look at my health, thank you.  I am rejuvenated, properly medicated, and on the road to even greater success now.

Oh, and I look forward to Acing your exam.

Next year.

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