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8 Extraordinary Things You Need to Know About People With Chronic Illness

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For those who do not have a chronic illness, I am going to share eight extraordinary things about people with chronic illness that you need to know. May this list encourage you to understand their plight and their incredible passion to live despite their struggling. May it open a new perspective for you to consider. May it help you understand what they endure. May it inspire you to appreciate the people in your life who have chronic illness — and tell them how much you admire them.

For those who are reading this list and you live a life of chronic illness —

This one’s for you.

1. People with chronic illness have a profound strength to manage life while in pain.

They have a relentless will to live, so they must dive deep into their reservoir of strength to mine more of it every single day they are faced with the challenges of their pain. They don’t give up, despite the debilitating symptoms they experience. They push through and grab hold of what they can to find fulfillment in every day. This type of endurance and perseverance proves to be an ongoing battle that can result in profound fortitude.

Reach out to them and acknowledge their incredible strength, would you?

2. People with chronic illness tend to have an astute awareness of other people’s pain.

Because they have endured their own difficult road of affliction, they may be more in tune to the people around them. They can have extraordinary empathy and compassion for others and a deep understanding of adversity and hardship, so they can truly appreciate someone else’s struggles. When someone is hurting, they are often the first to respond and console because they know the significance of having support.

Reach out to them and tell them how much you appreciate their compassion, would you?

3. People with chronic illness may have a unique perspective on life.

They are constantly challenged to find meaning and fulfillment within their own limitations, and they may celebrate simple things that others take for granted. They can have an exceptional admiration for life experiences, because they often live within the confines of their captivity — unable to live an active life. They may learn to look for the gifts in every day with great vigilance.

Reach out to them and tell them how you are inspired by their perspective, would you?

4. People with chronic illness often don’t tell people when they are struggling.

Because they are sick so often, they may not want to burden others regularly. They might struggle alone because they hate to make people feel uncomfortable or obligated in any way. Many times, you might notice they disappear for a time – they could miss regular events, social activities, or friends and family gatherings. This is often when they are trying to manage their symptoms and are too sick to do much else. Their disappearance sometimes goes unnoticed. This is quite possibly the hardest part of being chronically ill. They desperately want to join you.

Reach out to them when you notice they aren’t around and let them know they are missed, would you?

5. People with chronic illness live a secret life of struggling.

They may not look sick at all, but underneath their appearance there is a person fighting fiercely to be well. They may fall apart as soon as they get home, after keeping the facade for hours wherever they were. They may have taken enough medicine just to get them through the day. They may mask their pain with smiles so others won’t notice their struggling. They likely don’t want to be seen as sick all the time, so they may try hard to present themselves as “OK”… and often, they are not.

Reach out to them and ask them how they’re really doing. Then listen, with empathy and love, would you?

6. People with chronic illness need you to check on them.

They often feel uncomfortable reaching out for help or support because they may feel people have more important things to do. Many are sure people are tired of hearing about their sickness/disease, so they stop telling their family and friends about their struggles. They hate what they are enduring, and wish things were different.

Reach out to them and assure them you are not tired of hearing about their struggles (and genuinely mean it). Ask them how you can help them, would you?

7. People with chronic illness can fail to follow through on commitments.

While they want so desperately to live a full life connecting with others and showing up when they say they will, people with chronic illness don’t have the privilege of knowing how they will feel each and every day. They may wish they could be more predictable, but their illness controls the outcome. If they fail you, please understand that they are more disappointed than you could ever be. They have to live with the anguish of letting you down on top of the physical pain they endure. All they have is hopeful intention and often it is met with utter defeat.

Reach out to them and tell them you absolutely understand and ask to reschedule for when they are feeling better, would you?

8. People with chronic illness need to know they are loved unconditionally, because you cannot place conditions on them.

While most of the world and the people in it operate on performance and productivity, many people who have chronic illness cannot measure their worth in this way. Some days, they may feel they are of no value because they couldn’t do anything productive besides manage their illness. They can feel useless and insignificant to the world around them. They must learn to love themselves without expectations, and you must, too.

Reach out to them and tell them how valuable they are, just as they are, would you?

People who endure long-suffering are in all of our lives. Let’s make sure we walk alongside them with the love and support they deserve.

Who has chronic illness in your life?

Make sure you reach out, and tell them they are something special, would you?

Christine’s book “Help and Hope While You’re Healing” can be found on Amazon.

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8 Extraordinary Things You Need to Know About People With Chronic Illness

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To the Caregivers of Chronically Ill Children

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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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When You're Sick and Tired of Being Sick and Tired

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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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To My Younger Self Who Teachers Said Was ‘Too Sick to Be Smart’

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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.

From,

Your Future Self

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To the Well-Intentioned Humans Who Think I'm 'Too Young' to Be Disabled

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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 to People Who Don't Understand Your Fight for a Diagnosis

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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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