To the Person With a Chronic Illness Who Feels Like a Burden

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Dear Warrior,

Yes, I called you a warrior, because that’s exactly how I have come to view people dealing with chronic illness. These warriors display courage in the face of fear and the uncertainty that is a constant part of their life. They retain their compassion and propensity to look for good in the world despite being mistreated or ostracized by others. They smile through the pain and make jokes to help put everyone at ease when they are imploding inside. They become familiar with emotions and experiences many people may only see once or twice in their lifetime.

hand holding key that says warrior

But unfortunately, warriors can also feel like a burden from time to time. Whether that feeling is prompted by the insensitive comment of a family member or a misinformed post of a Facebook friend, it can get us at our core. It harshly whispers, “You are not adequate. You are different in a bad way. All that you are and all that you are able to do is not enough for the people you love and the society you live in.”

But in those low moments, we must challenge that negative way of thinking. We must not let the misguided views of a few take up residence in our subconscious. There’s a wonderful quote by the author Max Lucado that sums it up perfectly: “You are valuable just because you exist. Not because of what you do or what you have done, but simply because you are.” These words imply we are all inherently worthy, because we’re all human beings. And that is a truth we should believe in.

It’s a reality that we will feel inadequate or burdensome at points throughout our journey, but what’s important is how we respond to those feelings. Unfortunately, we live in a society that says if we can’t do what everyone else can do, we are somehow less. People often forget we didn’t choose the hand we were dealt — it was chosen for us. Judgment is freely passed on people who aren’t viewed as “active, contributing members of society.” But what they don’t understand is we have other ways of contributing to the greater good. Sometimes, it’s just by being who we are.

Don’t waste a precious minute feeling like a burden. If we could change our situations, we would. Instead, let’s advocate for one another and show people how wrong they are. And if the word “burden” somehow weasels its way into our heads, may we always quickly replace it with “warrior.”

Stay strong,

Fellow Warrior

Follow this journey on Chronically Enlightened.

Lead photo source: Thinkstock Images

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To the Doctors and Nurses of Teen Patients With Chronic Illnesses

Dear Doctors and Nurses of Teen Patients with Chronic Illnesses,

Hi. It’s me. You know, the patient with the complex and hard to manage disease that frustrates you? The patient you don’t know how to treat? The patient with the symptoms you have no name for yet? When I’m sitting in your examination room, I’m probably there because something is bothering me.

I may not be the happiest and brightest smiling patient you see that day. I wish I could smile all of the time. I really do. But sometimes that is extremely hard to do. No, I’m not depressed. It’s just a bad day.

You always see me at my very worst. All of our conversations revolve around the latest new symptom, medication or treatment. I understand that sometimes you have to treat patients as if they are just a number in order to maintain your objectivity and not get too emotionally involved. I can’t imagine how hard it must be to have me as a patient for years and not have your judgment clouded by emotion. However, I want to take a minute to tell you about all the things I don’t get to share with you.

You see, when I’m lying in that hospital bed in the middle of an admission, I’ve had to press the pause button on my life. Unfortunately, the rest of the world doesn’t stop to wait for me. But, did you know that before I was admitted recently, I received a scholarship acceptance letter? This may sound crazy, with as horrible as I look right now, but in three weeks, I’m testing for my black belt in taekwondo. I currently have straight As in all my college classes, and next month, I’m taking a class to get my Wilderness Emergency Medical Technician certification. In December, I’m looking forward to spending my winter break skiing and training for next ski racing national championship. I could go on and on about what I’ve been doing and my upcoming goals. 

Hopefully, when you think of it this way, you can see I am more than just the latest patient to walk into the examination room. While you only hear about the stuff pertaining to my health and it may seem like my illnesses dominate my life, I actually do a lot outside of the hospital. Time doesn’t give us the chance to share some the happenings of my life or latest accomplishment with you, and that’s not why I come to see you, but I promise I’m leading the most fulfilling life possible. I am doing my best to live my life to the fullest despite my chronic illnesses.

Sincerely,
The Teenage Patient with a Life Outside of the Hospital

I chose to write this letter because there is a stigma associated with being a teen seeking medical treatment. We aren’t children anymore, but we aren’t adults either. Our bodies respond differently sometimes. While many of us are made wise beyond our years because of our challenges, we will still need that extra guidance to make the right decisions.

Additionally, the doctors and nurses don’t always get to see us for the active, funny, and vivacious people we are capable of being. The look of pain on our faces is sometimes misinterpreted as teenage moodiness. The teenage years are confusing for everyone, whether their bodies work well or not. Sometimes that extra five minutes just to see how we are doing can go a long way.

We appreciate all of the doctors and nurses who work with us to help us get back to being our very best. Thank you!

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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The Things I Never Told You About My Chronic Illness

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If you’re reading this, perhaps you know me or someone else who has chronic illness(es). Maybe you wanted some general advice or are reading this just because. I can share with you a few pointers from my personal experience.

1. I know many people are often unsure of what to do, what to say or even how to act around those with different illnesses. But what I don’t think people understand is that is perfectly OK. It’s OK not to have the right things to say all the time. We often can’t think of things to tell ourselves, so it’s understandable that you may not either. What I’ve found to be most true is that the silence a friend can offer you can speak more than a thousand words. Please hear me when I tell you that being by our side through these tough times can speak more to us than any words you could form together. If you’re unsure about something or are genuinely curious, ask us! I love addressing questions and misconceptions to help you better understand me.

2. Treat us the same way you would treat anyone else. We often seek normalcy in the midst of our unusual circumstances. Deep down inside we know we may not do things the way they’re “commonly” done, but it doesn’t necessarily mean we can’t do them at all. For example: don’t avoid inviting me to dinner just because I may not be able to eat much at the restaurant, or pass on inviting me to the mall because my muscles wouldn’t be able to keep up. I would love to get a text message asking to go out to dinner because to me, it’s about the socializing and the company, not the food. Although my muscles would never be able to keep up on their own at a mall, I have a wheelchair to use so I can still go and shop ’til I drop! (Not literally, that might be a bad idea.)

3. Please be lenient and understanding. Our illnesses turn our lives into a giant, fictional, question mark. We never know when we’re going to have a good day or a bad day. We never know when we will end up in the ER, in the hospital or get dragged into an emergency clinic appointment. We may make plans with you but are often forced to cancel them or reschedule. Please try and understand why we do this. It’s not because we don’t want to spend time with you. It’s not because we’re lazy. We would much rather follow through with our plans than battle through the next set of struggles forcing us to cancel our time with you.

4. In the end, you can forget every single thing I said and every piece of advice I have to offer, but if there is one thing you never forget, please let it be this: don’t forget we are still human. We are not our diagnoses. We are so much more. If at times our illnesses become “invisible,” remind yourself that we are not. We have feelings, hopes and dreams. Our days may be filled with appointments, medication regimens, therapies, etc… compared to holding up a job or attending school, but they are just as exhausting and physically taxing. We all struggle every day, even when it doesn’t look like it. We need you in our corner to lend a shoulder to cry on. Despite our illnesses, some days we will need your advice to help us through.

Follow this journey on Warrior in Disguise.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or illness during the holiday season, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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To My College Professor, From Your Student With a Chronic Illness

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Dear Professor,

Even before we met, you knew my name. You received a vague email from disability recourse services outlining my accommodations, which are the supports and services colleges provide for students with disabilities or illnesses. I emailed you asking you to meet. I don’t know what you were expecting when I walked into your classroom, but I probably didn’t fit the bill. I had a tube or two (depending on the day) coming out of me and tethered to a backpack.

Joan Elizabeth Fanwick.2-001

At some point during the first week of classes, I met with you. I tried to explain my situation to the best of my abilities, but sometimes I barely even understood it myself. I covered the basics: the tubes, the fainting and the possible hospital admissions. There were a lot of things I wanted to say but could not.

I wanted to say I hate having accommodations. In fact, I didn’t have accommodations for my first year of college, even though I probably should have. When I finally did get a letter from my doctor to get accommodations, I cried because it validated I was sick.

I wanted you to know if I ever used my accommodations, I was probably doing much worse than I let on. During my first semester with accommodations, I had four hospitalizations and one surgery. But I never once asked for an extension on an assignment or used any other accommodation — with the exception of extra absences due to the fact I was confined to a hospital bed. When I finally did ask for an extension on an assignment, I knew it wasn’t a good sign.

I wanted to tell you if you work with me, I will work just as hard and probably harder than all the other students. Yes, I might need an extension, miss class or have to leave early. Here’s the thing, though, if you give me a chance, I’ll get in all my assignments. And if you give me the time I need, I’ll give you high-quality work. I’ll talk to my classmates, get a copy of their notes and shoot you an email if I have a question.

If you are begrudging when I use accommodations, I’ll do my best not to use them. But if I don’t use my accommodations because you made me feel bad about needing them, everyone will suffer. I probably won’t hand in the best-quality work, because I was dealing with side effects from medications while writing or finishing an assignment from my bathroom floor. If I go to your class when I’m not up for it, not only will I not be able to participate in class or learn that day, I’ll also have trouble doing any work I might have been able to easily complete from bed had I not gone, because I’ll be too sick or in too much pain from pushing myself.

Chances are, by the end of our first conversation, you already made up your mind about me. You’re either impressed by the fact I’m in college and will help me keep it that way, or you think I’m just trying to use my illness as an excuse. Or maybe you think I shouldn’t be here at all.

I beg you to give me and any other student with a chronic illness a chance. Give us a chance to show you we’re good students. We’re working even harder than your average student to be here. Just work with me, and I may surprise you.

Sincerely,

A Chronically Ill College Student

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To the Friends Who Offer ‘Cures’ for My Chronic Illness

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Sometimes, a simple chat with my friends and family can turn into a conversation about me defending my health choices. People will insist on telling me ways to boost my immune system. The problem is when you have an autoimmune illness, it’s usually because your immune system is overactive, and I take immunosuppressants to quiet it down so it stops attacking my blood vessels.

Many well-intentioned but insistent “friends” will spend hours talking to me about how I can boost my immune system. They don’t do this out of malice; they do it out of caring. They see me with constant colds or worry about me getting a cold or virus, but they don’t understand that boosting my immune system may put it into overdrive and begin a horrible cycle of flares. (A flare is a reactivation of my illness. I’m never cured — I just hope to keep things quiet throughout my life.) I know suppressing my immune system places me at greater risk for infections, but I live under a no-win situation and sometimes have to pick the lesser of two evils.

I hate to admit it, but I have gone as far as to drop contact with some of these “friends.” I can’t take being told about herbs, meditation, yoga and what they learned on “The Dr. Oz Show” the previous day.

If you’re a true friend of someone with an autoimmune illness, please listen to us and don’t push things on us. We would love a cure. We dream about a cure. We might even do a human sacrifice to the volcano goddess for a cure. Please understand we’ve learned our health is all about maintaining.

Maintaining the best lifestyle we can.

Maintaining the least amount of medications to keep our illness from flaring.

Maintaining the side effects of the medications we have to take.

And maintaining some normalcy in our lives.

Please don’t add to our stress (which can cause flares) by insisting we try your latest find. We know you love us and don’t want us to suffer. We know you just want to help. We know you want us “cured” and back to our old selves. Please understand we would like that, too. We don’t wallow in our diagnosis, and trying to make you feel OK about our chronic and incurable illness can stress us out.

Be our friends by listening without giving us cures, quick fixes or your opinions. Just tell us “I’m here” when we need a cup of tea (or something stronger). Call us when you’re at the grocery store and ask what can you get for us. Just be there for us and don’t abandon us because we have to cancel often. Instead, visit us with takeout food and a movie so we can stay in our pajamas and enjoy some time of not being alone. (OK, and help me fold a load of laundry while you’re here.) Understand I want/need to do things myself but could use company while I do them.

Yes, there are definitely alternative therapies that can lessen the pain, lower the inflammation or just help us along the path of this bumpy journey. But please don’t offer us “cures” or ways to boost our immune systems.

We need our friends to act as friends with open arms. We need people who will listen and won’t try to fix us or cure us. Just be our friends, and we will reward you with our unique sense of humor and newfound view of the world around us.

Follow this journey on Karen in Wonderland.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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To the Chronically Ill Teenager Stuck in the Hospital

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Dear 17-year-old me,

Things seem pretty bleak right now, don’t they? You’ve been through a lot in the last year, and although I know you wish you weren’t here, here you are. You’re still alive, and a part of you is clinging on, even though you don’t want it to right now.

I know you can’t see through until your 18th birthday in a few months’ time. I know how hopeless it feels, to know you will be in hospital when your friends would be out having a good time. I know how hard it is to feel like you can’t even contemplate surviving that long. I know how isolated you feel knowing part of you is actually relieved you’ll be in hospital, instead of having to act like other teenagers. I know you feel like you’re being left behind in life because your illness is taking ‘Lizzie’ away from you, and turning you into someone unrecognizable. I know you want to be rid of it all, and I know you believe the only way that that can happen is to die.

I’m not going to lie to you. Your health problems will never go away. You will struggle many times in the future, and you will have times when you feel even worse than you do now. But the thing is, you will survive what you’re going through now, and you will survive those times too. You may not want to survive, but you will eventually find purpose in life. You will find some reasons to live, some reasons to be happy.

Your physical health will deteriorate further, and it will do so for the rest of your life. Things will get hard, but you will grow in tenacity. You will learn to demand what you need and to ask for help when that battle has become too difficult. You will learn to trust other people so you can seek help and accept it without feeling guilty. You will struggle, but you will get better at coping at the same time. The more life throws at you, the harder you will struggle. The harder they throw that ball down, the higher you will bounce back.

Of course, it won’t always be like that. There will be times you’ll want to give up and times you try to do so. It’s never going to be easy living with a combination of serious psychiatric and physical disabilities. But you’re stubborn, and your obstinance will help you. When you’re bereaved, you will find solace in activities which you haven’t even tried yet. When illness destroys all your hopes and plans for the future, you will find other ways of making your mark on the world. When you think you’re unlovable and that you don’t deserve happiness, you will find someone wonderful who makes life bearable. Some will be closer than you think.

girl sitting outside with a dog Don’t change what you’re doing now. It may not feel like it, but you aren’t stagnating. I know you want to go to college, and I know you’re frustrated that you can barely stay in school. I know you want to work hard, and I know it’s infuriating that you can’t stay awake long enough to do any homework. I know you want to be a musician, and it hurts that you can’t physically play anymore. I know you want to run again, and, for a while, at least, you will do so. After that, you will find even better things to do, which you will enjoy even more.

I know you don’t know what you want to do in life. Don’t worry though, you still won’t know what you want to do by the time you get to my age! But you will have had so many wonderful experiences that you will have endless possibilities to feel happy and fulfilled. You will achieve things you cannot contemplate right woman in a wheelchair now, and you will learn to feel again. You will learn to feel happiness. You will learn to feel love. You will learn to feel contentment. You won’t always feel happy, loving and loved or content — that would be unrealistic — but you can still have those moments which make the fight worthwhile.

Life will throw many more challenges your way. You will lose people you love, and your health will get worse. But you will become more resilient, and you will cope better. You will be happier.

Finally, be kind. Be kind to others and be kind to yourself. Love as much as you can. You never know when things will change. “This too shall pass.”

With love, from you, age 25

Follow this journey on My Bendy Life.

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