boy in hospital with a saline IV drip

Dear Caregiver,

You don’t know me. I’m just another nameless face in a crowd of the near dozen people who crowd into your chronically ill child’s hospital room every morning to discuss the plan of care for the day. Generally, you have no need to interact with me, and I don’t have much to say to you. I’m just the pharmacist.

But I see you. I see you as you look at us all in weariness, having come in through the emergency room during the night, with your child having her yearly battle with pneumonia.

I see you the next day as your second chronically ill child has been brought in during the night with the same pneumonia as his sibling.

I see you as you go back and forth across the hall to their rooms, wanting to be with both of them but only able to be in one place at a time.

I see you as your child is unable to protect his airway due to his frequent seizure activity as you remain calm, cool and collected as the medical team sedates your child and puts a breathing tube down his throat.

I see you as you look forward to going home that day, only to have your hopes dashed because of a fluke in obtaining timely home nursing care or that night’s total parenteral nutrition (TPN).

I see you as you sit by the bedside of your premature baby, wondering if today will be the day you can finally hold her for the first time.

I see you as you sit by the bedside of your baby, as you have every day for the past 12 months since she was born, and receive the news that this turn for the worse is likely the turn for the worse.

I see you as you bring your child in, overwhelmed with her care and unable to understand how to best care for her due to a language barrier.

I see you as you bring your child with cancer in for abdominal pain, not knowing what is wrong this time … only for it to be his last day.

I see you as you play cards at the nurses’ station with an older child waiting for a heart transplant, all the while hoping against hope that your own child receives a new heart soon before time runs out.

I see you as your recently transplanted child comes in showing signs of organ rejection, praying that this is only a mild rejection and everything will be fine.

I see you as your immunosuppressed child develops a life-threatening infection from a cut on her finger … an infection that will be her last.

I see you on your knees in the hallway, sobbing and shouting your child’s name as the medical team attempts to brings her back from the dead.

I see you as your child is brought in critically ill and the hardest of choices has to be made: Do you allow the surgery, which would possibly result in his death, or let him die from the condition he was brought in for … and you choose to say goodbye?

I see you standing in the corner of the room as attempts are made to resuscitate your child to no avail, and you finally take a deep breath and say, “Stop. He’s gone.”

I see you exhausted. I see you admission after admission, year after year. Caring for your chronically ill child consumes your life, even with home nursing care and other caregivers helping out. You hold on, hoping your child can hold on this time, too.

We, the members of the hospital staff, can’t imagine the strength it takes to do what you do, day in and day out. We celebrate your victories and mourn your losses. After years of caring for your child, we can get attached to them, too. And when the worst happens, we feel it, too. It hits us hard. We hide our tears from you, but they do come. The strength you have as a parent, grandparent or foster parent — whoever you may be — is something that is rare. It’s something only caregivers have.

So if you feel overwhelmed or invisible, just remember: We see you. And we thank you.

Written in honor of National Caregivers Month and all the caregivers I have had the privilege to meet. All stories above are true stories of actual patients and their caregivers.

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Chronic illness is for life.

That’s the hardest part of it, I think — knowing that there isn’t a light at the end of the tunnel, and if one should appear, it’s probably a freight train.

When one has a cold, flu, or infection, you know that no matter how miserable it is, there’s an end. It will go away.

Chronic illness doesn’t go away.

It may be treatable… but treatable doesn’t equal better or even feeling relatively normal.

It’s like luggage. Ugly luggage that you didn’t even get to pick out and have to drag everywhere.

As much as I hate taking medications…it’s even worse not having them to take on a regular basis.

My sleep schedule is a mess and I think my body thinks afternoons are mornings now — mornings were the worst pain/symptom time of my days and now it’s afternoon/evening.

The Botox downswing is hell… but even more hell is knowing I can’t get my next treatment since I’ve lost my medical coverage.

Sick of being sick.

Sick of talking about being sick.

Sick of knowing others are sick of hearing about it.

Sick of it being my day to day and having little else to talk about.

Sick of knowing it’s for life.

Sick of being in the gray area of waiting and wondering when the next time I can get relief will be.

This is hard. Harder because I’ve had treatment for a while and now it’s gone.

I don’t know how I did this before. Maybe not ever having options before was better for me, or at least easier for me to deal with because I didn’t have that hope before.

All I know is it’s so damn hard to exist these days and to be OK with it. So hard to act like myself. So hard to care. So hard that no one around me really understands why it’s so hard and I can’t just deal with it and move on.

And I can’t understand how I can be expected to deal with it and move on while I have to haul this luggage 24/7, 365 days a year.

It’s there in the shower. It’s there hanging on me while I’m doing dishes, getting dressed, eating… it wakes me up when I sleep or keeps me awake.

No one else can see it weighing me down, but I feel it with every breath I take.

It confines me. It smothers me. It sucks my energy and my enjoyment of life.

Chronic illness is for life — but it isn’t so much a life as it is a life sentence without any possibility of parole.

I know I can get through life… but I don’t have to like it. I don’t have to smile and put on my happy face. I don’t have to pretend for anyone else’s comfort while I serve my time.

I just have to keep breathing. But sometimes that just doesn’t feel like enough.

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Old Friend,

You were the one people called smart. There was nothing you couldn’t do. Your eighth-grade science teacher told your parents he had “nothing left to teach you.” Your English teachers thought you wrote at a college level. You were accepted into a competitive private all-girls high school of your choice and showed up on the first day of ninth grade full of determination while wearing flower earrings and pink lip gloss with your uniform.

What changed?

The teachers, the school, the students, the work — it was all new — and you started to crumble. There were cracks in your foundation to begin with hidden in your veins in the form of an immune disease that slept like a dragon. Nerve damage stopped your stomach from working, a disease caused mucus to fill your lungs and your new teachers chipped away at the cracks over time out of malice and spite with something to prove.

Some people say they aren’t good with change, but you never understood that. How can you not be good with something that happens whether you want it to or not? Your best friend told you change is like a wave, and you have to fight it just a little if you want to stay above the surface — just like you had to fight the ocean in South Carolina when you were 14. Burned, peeling, sun-warmed and full of seawater and lemonade — those were the last good weeks.

You could taste your future even though you were so young — a world-renowned university then medical school. You told me last year that lemonade still tastes like “the maybes” to you and that you can remember the taste of blood in your mouth when your family was driving back from South Carolina. Blood and bile and spit, and as soon as the car pulled into your driveway back home, you were on your knees throwing up a fountain of red onto the neighbor’s fence.

Two weeks later, you could taste blood again. You felt stomach cramps that you thought were butterflies because of the French test you had that day, and then your brother found you cocooned on the floor of your room in a puddle of red vomit and sweat when you should have been downstairs eating toast with peanut butter and parroting French verbs to your best friend over the phone.

I didn’t see you for weeks after that. You came back to school sometimes, pale and ashen with arms covered in the scars from needles. I visited you once in the hospital that summer when you were thin and choking on reassuring words for me and on the feeding tube running down the back of your throat.

I barely saw you in 10th grade, but when I did, you had gained weight from the steroids treating your stomach but harming everything else. You were feverish, and angry, covered in rashes and barely smiling. The flower earrings were gone. So was the lip gloss. And you walked around lost and in hoodies three sizes too big in an attempt to hide yourself and your insecurities.

In 11th grade, I watched you morph back into your old self, a butterfly emerging from a cocoon of pounds gained from medicine and doubts thrust at you by teachers who didn’t think that you could be simultaneously smart and sick.

Who says you can’t be both? I would ask as we walked home together, but you would shake your head and say that you couldn’t be both. And I knew you would cry yourself to sleep that night. I watched your grades slip — the smartest girl with enviable wit and an easy smile was gone. She was replaced by a timid one with a disease-ravaged body who couldn’t find the balance between health and school because you had been told by those meant to nourish your intelligence that such a balance didn’t exist. You avoided your assignments out of fear: If your teachers said you were too sick and stupid to do them, then why would you think any differently?

In 12th grade, you started it with me in a coffee shop. We had friendship bracelets and were both bitter but determined, and you said with a glint in your eye I had not seen for so many years that you just wanted to graduate to prove that you could at least do that one thing right. Even graduating was a fight: “She’s too sick to be smart,” “She’ll never get into college,” “She should drop my class,” “We cannot keep accommodating her illnesses,” “She will fail,” “College would be a waste of money” and “Is she faking her illness?”

Each snide comment and insensitive remark from the staff broke you down a little bit more, but you had learned to build yourself back up now. I watched as all the good in you was replaced with something vindictive. We graduated high school with you glaring at everyone you met, wearing all black and spiked earrings and talking about wanting tattoos and more piercings and maybe blue hair.

But look at you now, friend. You shed the high school that said you couldn’t, and you are starting to learn that maybe you can do more. When I see you, this is something you refuse to acknowledge, but I can feel the hope radiating from you like you can taste the maybes in lemonade.

You ask, “What if some things are meant to stay broken?” And I tell you that you were never broken to begin with. You were made sloppily, perhaps, assembled with haste and missing a thing or two, but those missing pieces can be filled. Not with the medicine and blood plasma and antibodies they should be filled with, but maybe with self-confidence and a smile or two. You can fill them yourself — I’ll help you.

Your smile used to burn me and others like the South Carolina sun burned you. Now all we see are frowns and smirks and tears — still tears. You tell me and everyone else that you haven’t cried in years, but at night your walls still tremble with sobs as you try to get fitful hours of sleep despite the pain and discomfort that plagues you.

Even though you made it through high school, where you were told you couldn’t and shouldn’t by teachers who you went to for reassurance of intelligence and potential, you still wonder why you’re fighting every day for things that are so easy for others. That one success was not enough; it was you breaking away from discrimination and ignorance, but you still don’t see it as a triumph.

You wonder why you have arthritis even though you’re barely 20. You wonder why you cough up blood and mucus almost daily, you wonder why your nose bleeds for hours on end without stopping and you wonder why breathing is hard and your heartbeat is irregular and why you have daily migraines.

Your vomit up everything you eat. You can’t walk up a flight of stairs without coughing. You get infections that last for weeks on end, and you are horribly underweight from the diseases that destroy you from the inside out. Breakfast is pills, lunch is Gatorade and ginger ale and pills and dinner is pills and whatever food you can choke down so that your new friends at college don’t worry too much. Your grades are high, but the higher they get, the more stuck you are on how you were mistreated in high school.

You need to move on. It’s time to let go. The teachers who didn’t teach you anything except how to discriminate against yourself for your invisible illnesses taught you that out of ignorance and malice. They don’t know you or your potential. You are, and will always be, smart despite being sick. No matter what your teachers in high school wrote in aggressive emails and yelled over the phone, intelligence and health are not correlated. They couldn’t see you, cowering behind the hospital visits and brain fog, and they didn’t want to try.

But I do see you — behind the hospital visits and hours spent vomiting and tearful admissions of pain. You will grow up to be everything you ever thought you would be the last time you drank a tall glass of lemonade. Your tears will not drown you the way you always thought they might; they will help you afloat on the ocean that you compare to change and carry you to the shore safely.

You’re full of determination and fight — mucus and bile and medicine, too — but those pale in comparison to your resilience. You will grow and change and become something more. Your high school teachers who scoffed at the idea of an invisible disability will stay narrow-minded and ignorant. Their offensive comments were not personal; their obliviousness is their own doing. And it isn’t your job to try to educate them the way you wished they had.

You’re more than your illnesses, countless though they may seem. Their names don’t comprise your identity. You have a name, entirely your own, that does encompass your poor health but also so much more. Your health will never define you so long as you keep trying to stay afloat.


Your Future Self

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I know you mean well. Frankly, I really do appreciate that you had the courage (and courtesy) to ask why I have a cane rather than leaving me to squirm and feel judged as you stare at my “normal” looking legs. I didn’t even mind when you suggested a chiropractor for me to try, as though I haven’t tried chiropractic care, acupuncture, physical therapy, cognitive behavioral therapy, occupational therapy, and supplements in more numbers than my age. I enjoyed our conversation with the exception of one lonesome phrase. Ironically enough, it was one of the first things out of your mouth after I told you that I am recovering from spontaneous paralysis. You looked at me with such a well-meaning glance, and you said, “But you’re so young.”

I know you meant it as a phrase of sympathy, an expression of the fact that this is not something anyone expects to go through when they are as “young” as me. But when someone who is in my position hears that phrase we may interpret it differently.

We already have doctors telling us our bodies don’t work the way they should.

We already feel betrayed by the very muscles and nerves we have grown with all our lives.

We already feel discouraged, victimized, and at war with an entity that we can’t escape: ourselves.

To hear the phrase, “But you’re so young,” belittles the fact that we are experiencing pain, discomfort, confusion and struggle every day. Being young does not excuse us — or anyone — from those things.

To us, it may feel like we can’t even “correctly” have a disability. That even in our disability, we are black sheep: people who don’t quite belong.

but you’re so young

We don’t fit in with our peers, and your phrase reminds us that we also don’t fit in with the people who “typically” experience what we are going through; that we are separated not only by physicality, but also by generation.

but you’re so young

Makes us feel alone.

Being young and being female does not exclude anyone from experiencing hardship. Please don’t take my community of fellow limpers and cane-toting crochet addicts and try to revoke my membership because of my age.

I am young. I am also disabled. I am also strong as hell, hurt as hell, and sick as hell of being sick as hell. So yes. Express your sympathy, but please don’t tell me that I’m too young to be experiencing what I am experiencing.

Because as a matter of fact, I am.

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Talking about your illness to anyone outside your closest family and friends can sometimes feel a little messy. They understand the words “sick” and “doctors appointments” and “tests,” but sometimes they don’t understand the depth of the situation, especially if you are still in the searching-for-a-diagnosis stage.

I am used to the “I hope you feel better” and the “Well, I guess it could be worse” comments, but the biggest one I can’t get over is when someone says, “Well, I hope nothing is wrong” or “I hope they don’t find anything serious.” Somehow this always feels like a punch to the gut. These statements can seem belittling to someone who is trying desperately to find out what is wrong because something obviously is. Sometimes that official diagnosis is all that is between validation and yet again feeling like everything is in your head.

I try really hard not to make a snide, “Well, we are already past the ‘serious problem’ stage but who knows, maybe it’s just a cold” remark when someone says these things to me (sometimes it doesn’t always work that way). I try to calmly explain that this diagnosis, as bad as it may sound, is what we have actually been waiting for, searching for and researching endlessly. This diagnosis is the only thing that fits all of my symptoms. Yet there they stand hoping for the exact opposite, albeit with good intention, which is no less hurtful though.

text that says everyone you meet is fighting a battle you know nothing about

Living with a chronic illness may be normal to those of us who have them, yet to someone who doesn’t live with them, I think these comments really do come from a good place. Most people don’t understand the constant struggles, doctors visits and efforts put into getting your diagnosis. They could never understand hoping that the doctor tells you that you have this lifelong illness all because this is your last chance at finding out what is going on inside your body. They don’t see the everyday battle between you, your mind and your body, so just remember to stay calm and let it roll off of your back. Chances are they just don’t understand and that is OK.

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As a chronic illness warrior who runs a business, I used to hate the word “hustle.” The full-on, full-throttle way many in business talk about getting things done repelled me. It left a bad taste in my mouth, and I couldn’t help thinking, “How dare you tell me to work harder? Don’t you know how hard it is for me just to do the things you take for granted?” 

I was upset, but I was curious. I wanted to know why this type of language triggered me so badly. I didn’t want to feel anger and resentment. I just wanted to understand why I had these feelings, so I got out my journal and wrote about it, and this is what I discovered: “Hustle” reminded me of how inadequate I felt compared to the people using that word. It was like normal little me looking up to some superhero and feeling in awe but also so small and insignificant. The word put me on the defensive so quick it was like someone had flipped a switch inside of me. 

I asked myself why I felt this way and then I tried to flip it. Instead of saying to myself, “It makes me feel small, it makes me feel weak and it reminds me of the things I lack,” I thought to myself, “OK, is that true? Am I weak, am I small, do I lack?” And the rebel inside of me (she always wants to argue) said, “Heck no!”

That rebel reminded me I am the strongest person I know. I’m a fighter. I don’t play small. There’s nothing I lack that really matters to me. I changed my story. Then something strange happened: I stopped feeling bad when I heard the word “hustle,” and it actually started to resonate with me. Suddenly, I felt like I had more in common with the people I looked up to. 

One of the new things that suddenly resonated for me was “giving 100 percent.” Because that’s what hustling is all about, right? But I had got it all wrong. It wasn’t about giving 100 percent — it was about giving my 100 percent. That’s a huge difference. Hustle isn’t about trying to match up with someone else’s 100 percent. It’s about discovering what 100 percent means in your life and owning it. 

It doesn’t matter if 100 percent to you is 20 percent to someone else. It’s your energy, your life and it’s yours to use to its full potential. It doesn’t matter that you don’t have that same capacity every day, either. It’s about making the most of what you do have in that moment. Stop comparing to others, go back to your own life and be in the moment.

For a chronic illness warrior, I think “hustle” or “100 percent” means doing whatever it is you’re doing to be your best in that moment — in a healthy manner. I learned you can hustle at anything

You can hustle your meditation, which means you can truly dedicate your whole being to the act of meditation. 

You can hustle your relaxing bubble bath, which means you can commit to making relaxation and self-care a regular priority.

You can hustle your family time by being ruthless about keeping your time with loved ones sacred and not be encroached upon by other non-priorities.

Hustle doesn’t have to be hard work. How many times do you procrastinate and end up doing something that seems more fun, but then you spend the whole time feeling guilty and not enjoying it at all because you know you’re meant to be doing something else? I do it all the time! 

The difference between giving yourself permission to do something nice and doing something nice but feeling guilty about it is that it gives you a massively different feeling. And that’s the difference I now see between “warrior hustling” — as I now understand it — and not hustling.

It’s about not wasting your moments. When you make something a priority and give yourself permission to dedicate those moments to it, then you’re free to enjoy or appreciate those moments instead of feeling guilty about it.

If your body is crying out for rest and recuperation, then hustle that recuperation! Rest like you’ve never rested before! Challenge yourself to be the most amazing caregiver to yourself! Imagine you are up for an award in looking after you! 

Don’t fear “the hustle,” my warrior friends. You can turn it into a tool for good and well-being.

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