a woman in a hospital displaying a medical chart with her information

To the Doctors of Chronic Illness Patients


This letter is a response to this article written from a doctor’s perspective. While I by no means speak for every chronic illness patient, this is what it’s like for many of us on the other side of the doctor-patient equation.

Dear doctors,

Are you looking through our charts, our lengthy and complicated charts, wondering what you got yourself into? Yeah, we know. It’s OK. We know we aren’t the type of patient most doctors like to take on. We can’t be easily fixed and we know that can be disheartening and frustrating for you. We get disheartened and frustrated, too. Hey, look at that! Common ground. Not a bad place to start!

Chances are we’ve seen a lot of doctors before you, and chances are they haven’t all been positive encounters. We’ve been doubted and we’ve been blamed. We’ve been misunderstood, ignored and forgotten about. It’s hard not to be a little jaded after all that. We don’t want to be crushed by high hopes as they crash down, so we’re probably going to be a little wary of you, but we promise we will try to put that aside so we can start anew.

a woman in a hospital displaying a medical chart with her information Here’s what we want you to know about being our doctor.

It’s possible that right now we know more about our illnesses than you do, and if our diagnosis falls outside of your specialty, this is almost a guarantee. Please be OK with that. Consult the Internet or talk to other doctors to learn more, but when it comes to understanding how our illnesses affect our lives, talk to us. And even if you’re already familiar managing these conditions, don’t forget that our bodies never read the textbook chapter on “how to have so-and-so rare or unusual condition” so they might not follow all the rules.

Just be honest with us if you don’t have an answer or if you need to do more research. We’re educated about our conditions and we’ve developed good rubbish radar, so if you make something up or give us a round-about answer, chances are we will know. And chances are we won’t trust you anymore. Admitting when you don’t know something gives everything else you say more credibility.

Keep in mind that the 10 minutes in which you see us is just a snapshot of our lives. Believe it or not, we’ve spent time worrying about how we look before seeing you. We’ve worried that if we look too put together you might not believe we’re actually sick and you won’t take us seriously. We’ve also worried that if we look too disheveled you might think we’re depressed or don’t care about getting better and that, again, you won’t take us seriously. Just as a frown does not imply that we’re defeated and have given up, a smile does not indicate the absence of worry or pain. Please don’t make assumptions about how we’re doing based on whatever snapshot you happen to capture that day.

You might be scared of us because we have a chronic illness, but you should know we’re scared of you for the same reason — because we have a chronic illness. We’re scared you won’t trust our instincts and will accuse us of overreacting when we express concern. We’re scared you will become frustrated when we don’t get better and put the blame on us, that you will look at failed treatments as our own personal failures. We’re scared that one misunderstanding will red-flag our charts forever. You see, we can be as well-informed, empowered and proactive as we want, but we have no power. We can’t prescribe meds, order tests or make referrals. We need you for that. We need you to believe us, and we’re scared that you won’t.

So you’re scared. And we’re scared. There’s a lot of fear going on here. What about if instead of letting our minds shut down, we used this common ground as the foundation for an open doctor-patient relationship? Living day in and day out with these illnesses gives us an awareness of them and a perspective you cannot fully understand.

Please try to remember that. And we will try to remember that you can see things we can’t because you don’t live it day to day. We will try to remember that your education and experience treating other patients gives you a perspective we can’t fully understand.

We know you are human and we promise not to hold that against you. We know you make mistakes and that’s OK. Sometimes we’ll catch your oversight, but that doesn’t mean you aren’t doing your job as our doctor; it just means we’re doing our job as well-informed patients. We also know you won’t always be able to help us. Sometimes at the end of an appointment you will feel helpless. That’s OK, too. There will be more appointments; we’ll try again.

Just remember we’re human, too, and sometimes we get defeated. Because we know things could be worse, we sometimes forget we’re allowed to wish things were better. And sometimes we stop fighting for them to be better. We lose hope. We need you to help us through those times. Encourage us. Remind us what determination and perseverance look like. Most important, please know we will always appreciate you giving your time to care for us. Thank you for filling out the endless paperwork. Thank you for going out of your comfort zone to try and help us. Thank you for giving us a chance at a healthier future.

We know it’s your job, but we’re grateful all the same.

a woman hooked up to an IV lying on a park bench

Follow this journey on Finding My Miracle.

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To the Mom Living With Chronic Illness Who Feels Inadequate


There are things I wish my older self could have told me when I was young, chronically ill mom. Maybe I wouldn’t have felt so alone back then or so wrong and inadequate. I struggled every day to take care of my boys the best I could, second-guessing myself every night. Because that’s what you often do when you’re chronically ill and have children.

I want to tell all the young moms out there who are chronically ill, in pain or disabled the four things I wish my older self could have told me when I was a young, chronically ill mom:

1. Housework isn’t everything.

With children in the house, I understand there’s a certain level of cleanliness that needs to be maintained. And that’s fine. But housework isn’t everything. If a toy stays on the floor another day so you have the energy to read a bedtime story, so be it. If the towels don’t get folded and put away, no one will notice. I used wrinkled towels out of a clothes basket for years (the wrinkled shirts didn’t go over so well).

Living with an unpredictable, chronic disease means never knowing when or how it will strike, so pick your housecleaning battles wisely. Time with your family is more important than dust on the coffee table. Kids can draw in dust! And tomorrow, you may feel better.

2. Invent activities that allow you sit or lie down.

Games like sock golf (no clubs, just nine paper bags on the floor), camp out (I napped) or color clues (I drew clues they had to color in to find the next clue and eventually a treat) allowed me to sit or lie down so I could be involved.

My kids became experts at card and board games because I could play lying down. And don’t count out the movie marathon. Your kids won’t be ruined by a day of snacks and movies under the blankets, cuddling with you because you’re just that sore or tired. Your kids want your time, not your physical prowess.

3. Your children won’t see you as sick.

Sure, I told them. I did. I explained why Mommy couldn’t take them to the park or why Mommy is on the couch again. But they didn’t really see me as sick. They saw me as Mommy. And that made me the most important person in the world to them, and they love you for it. So although you may think they see you as sick mommy, all they see is l-o-v-e.

4. Your children will stand up for people with disabilities.

Now that my children have grown up, they protect me. Even my extremely shy 19-year-old son, who hates talking, took the phone from me during a disability interview to explain what kind of person I am, what kind of mom I’ve been and how many challenges he sees me face even though I won’t admit it. They have never judged anyone and have stood up for those with disabilities at every turn.

They work hard, play hard and truly care about people. This is what they’ve learned growing up with a chronically ill mom.

So, newly diagnosed mom, your instinct may be to feel like a bad mom because your house is messy or you can’t go for a walk with your kids today. But I’m telling you, that’s wrong. You’re exactly enough because you’re Mom, and you’re awesome.

collage of family photos

Follow this journey on When the Small Stuff Sweats.

When Medical Professionals Say 'You Look Too Healthy to Be This Sick'


It’s something chronically ill people likely hear all the time from medical professionals. I truly believe it’s meant to be a well-meaning gesture, but unfortunately it often falls short of that. They have our charts in hand. They see the long list of diagnoses, medications, allergies, hospitalizations, surgeries, etc. Then they look at us and mutter the words we know are coming, the words we wish we could prevent: “You look too healthy to be this sick.” It’s a gut-punch, and this is why:

Chances are it has taken us an immense amount of energy and struggle to get to that medical appointment. There are medications to be taken, tube feeds to be prepared, wheelchairs to lift and load, emergency medication bags to pack. There is energy spent waiting in the waiting room, which is often uncomfortable for someone who is chronically ill. When those words are muttered, in just a split second it discredits all of the time and energy a person with chronic disease has put into just getting there. By the time we get through all we did to get there, our symptoms are probably aggravated. We certainly aren’t feeling healthy, even if we so happen to be looking it!

It downplays what those of us with chronic illness experience on a daily basis. For most, it takes energy just to get out of bed in the morning. It takes willpower to get into the shower and get dressed. All those things on our medical charts have severely affected us at one point or still do today.

 

 

It discredits the physical and emotional pain that those of us with chronic illness experience. A medical chart is just filled with words, but those words amount to some of the worst memories of our lives. Those hospital stays listed are more than just a grouping of days marked on sheet of paper paired with an admitting diagnosis. They are days spent away from loved ones. They are the days spent in pain, lying in a bed alone wondering when we’ll get to go home, if we will get to go home and just how long we’ll get to stay there.

It makes us think you aren’t truly seeing us or taking us seriously. That is quite frightening for a patient with multiple health needs. It’s especially anxiety-provoking when you’re in the ER. If the medical professionals caring for you think you simply look too well to be as sick as you are, we know that could change the way you’re treated. It could mean pertinent labs are not drawn, necessary imaging is not performed, fluids and medications are withdrawn — all because they think you look too well to be carrying the primary and secondary diagnosis you have, and that you don’t have a high need for being seen. Being told you look healthy is no compliment in the ER; it’s an instant dose of anxiety. Especially when you’re feeling terrible and have been waiting five hours to be seen.

It minimizes what our loved ones deal with on a daily basis. By saying we look too healthy to be sick, you’re taking away from our loved ones who care for us on a daily basis. I’m sure our husbands, mothers, friends, children, nurses and other caregivers don’t agree — as they adjust their lives, alter their work schedules and carry the weight of our worlds on their shoulders — that we look super healthy. In fact, I can’t think of a single person in my life in the past six months who said to me, “You look healthy” other than some slightly condescending medical professionals. There’s probably a reason for that.

It probably is truly meant to compliment you, but the fact of the matter is there’s no reason for a medical professional to comment on your appearance period, unless it is actually an effect of a diagnosis (such as a rash, jaundice, tumorous growth, etc.). Such a comment isn’t helpful at all to a patient’s care plan, and it really can cause anxiety and despair.

If I had a solution I would offer one, but in all honesty, I think it would be best if those in charge of caring for individuals with chronic illness spent less time commenting on their looks, and more time coming up with a patient-centered treatment plan to help them succeed in staying comforted and stable.

Follow this journey on Learning to Let Go; A Different Dream for Us.

5 Ways My Chronic Illness Has Made Me a Better Human Being

5 Ways My Chronic Illness Has Made Me a Better Human Being


Let’s not sugarcoat it — dealing with any sort of chronic condition can really suck. No one particularly enjoys dealing with challenges in any form. But I have come to a point in my life where I recognize the health issues I’ve had to face helped me grow and become a better human being. In the hardest moments, I’d always ask these big, lofty questions

  • Why is this happening to me?
  • What is the point of this?
  • Why has God put this in my path?

But as I look back at my adolescence and the last couple of years, I realize dealing with a chronic illness has deepened the compassion and empathy I feel for others. I understand what’s truly important in life. Here are five ways my chronic illness has made me a better human being:

1. Humility: Illness is quite humbling.

Seeing a nurse walk through the ER halls with a basin of your bodily fluids to take for testing is humbling. Being an adult and having to wake up your parents in the middle of the night because you need help or a ride to the ER is humbling. Being in a place of vulnerability where you rely on the expertise and assistance of others is humbling. The truth is, anyone can get sick at any point. Illness doesn’t discriminate. And that’s why I try so hard not to judge my fellow human beings. I have no idea what they could be dealing with on a daily basis. I’ve come to realize people are the way they are and act they way they do for good reason.

2. Gratitude: Illness has made me grateful for the big things and the little things.

I appreciate being able to eat most foods I want to because there was a time when that wasn’t the case. I may not be able to eat those same meals in the future. I appreciate my parents for their abiding support and understanding. I honestly don’t know what I would do without them. I’m thankful I have connected with others dealing with invisible illness because they have taught me about true strength, perseverance and that being a good friend really can make a difference. Most importantly, I’m grateful for the good days.

3. Courage: Illness doesn’t care about your fears.

It didn’t care my two biggest fears were a solo hospital stay and surgery with general anesthesia. Dealing with an anxiety disorder most of my life, I feel like I haven’t always been a terribly courageous person. But knowing I overcame two of my biggest fears made me feel brave. In those quiet moments alone in my hospital room…that’s probably the bravest I’ve ever felt.

4. Authenticity: With an illness, things get real pretty quickly.

As much as you may have wanted to look cute, that ambulance crew is going to see your messed-up hair and ratty pajamas. In comparison to the pain you’re feeling, minute details like that don’t matter. Some people think illnesses should be kept private, but I’ve come to realize that sharing your challenges with others is one of the most authentic things you can do. I am not ashamed. If someone out there feels less alone because I shared my story, that is absolutely what I will to continue to do. Living an authentic life is important to me. Life is too short to be anything but real.

5. Compassion: When you experience a hardship for yourself, I think it makes you much more empathetic towards suffering of any kind.

My heart breaks for anyone who is in pain. I feel it in my heart. I’ve been there. There’s a saying, “You don’t get it, till you’ve got it.” That’s true in my case. The more challenges I face, the more I get it. Living with a loving heart and sharing it with others is something I can do, no matter how I’m feeling.

Dealing with illness sucks, but I know I wouldn’t be the person I am today if it wasn’t part of my path. Whatever I face in the future will teach me something. And because of it, I will somehow grow.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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.

green background with words the five most frustrating comments ive heard about my chronic illness

The 5 Most Frustrating Comments I've Heard About My Chronic Illnesses


1. “You are letting your illnesses run your life.”

This is one of the comments that not only frustrates me the most, but that often leads me to feelings of inadequacy and insecurity regarding my ability to thrive despite my conditions. It’s quite difficult not to let chronic conditions infiltrate all aspects of your life. It’s discouraging when you constantly have to be mindful of when and what you eat, when and how long you sleep, weather patterns, stress levels and taking your medication at the same time each day, and symptoms and flares still occur.

Sometimes no matter what you do, you’re going to feel poorly or have a bad day. Managing multiple chronic conditions with different triggers and treatments is not an easy task. There are days when I just physically can’t do certain things. I don’t let my illnesses run my life, but I realize they’re a part of my life, and managing them takes a lot of energy and effort.

2. “You’re not doing anything to help yourself.”

Let’s get a couple things straight: You only know about the things I choose to share with you. And what you can physically see with your eyes and how I feel on the inside are two drastically different things. You don’t see me take the numerous medications and vitamin supplements that have been prescribed by medical professionals to help prevent and treat my conditions. You don’t see me meditating alone in my room in an effort to lower my stress levels or make it through a particularly painful episode. You aren’t with me at every moment, so you couldn’t possibly see my efforts to help myself. You only see what you don’t see. You see when I miss a medical appointment due to symptoms. You see when I don’t go to the gym or exercise because I just don’t have enough energy. Try to stop judging me regarding the things I don’t do and focus on the things I’m constantly doing.

3. “There are people who have it way worse than you.”

I am 100 percent aware of this. This is what keeps my conditions and the unpleasant symptoms that accompany them in perspective for me. I realize there are people who have extremely painful, life-threatening diseases that have drastically detrimental effects on their quality of life. I realize those people may manage to accomplish more in their lives than I am able to in mine. But everyone’s experience with illness is different. Everyone’s brains are wired differently. The expectation that a person should be able to function a certain way in correlation to the severity of their illness(es) is kind of ridiculous. There will always be someone sicker, but that doesn’t invalidate a person’s individual struggles.

4. “I experience XYZ and I still manage to…”

While I’m truly sorry you occasionally get headaches from lack of sleep or a hangover or that you know what it’s like to experience a really bad stomach virus, I do wonder if my experiences with chronic migraines and multiple functional gastrointestinal disorders might be a little different. A concept I really believe in is that you can never truly understand the experiences, mindset and decisions of a person until you “walk a mile in their shoes.” You may think you would do a better job of being me than I would, but please keep those thoughts to yourself. They don’t accomplish anything positive. I do the very best I can at any given moment.

5. “I’ve read that XYZ can help with your condition. You should try that.”

Don’t get me wrong, I do appreciate your interest and concern for me. But unless you are a medical professional who really understands the intricacies of my conditions, I’d rather you just be a friend. I don’t need any more doctors in my life, but I sure could use some goods friends. I research my conditions and have figured out the best ways to cope for me personally. If you were in my shoes, you may not choose to address everything the same way, but the things that work for me are what work for me. We are all individuals, we all make choices and we are the people we are for good reason.

Sometimes the comments meant to accomplish something positive do the exact opposite. The most helpful things you can offer someone dealing with chronic illness are a compassionate ear, some kind words and a good laugh. A little love and understanding go a long way.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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.

What You Don't See Because of My Invisible Illness


When you see me smiling, what you don’t see is how much pain I’m in.

When you see me at the store, what you don’t see is that I’ve used all my energy dragging myself there only because I’ve run out of food at home.

When you see me out with my friends, what you don’t see is that it will take me three days to recover.

When you see me circling the parking lot for a closer space, what you don’t see is that I physically cannot walk all the way across the parking lot that day.

When you see me out on a walk, what you don’t see is that hobbling around the block is the extent of my capabilities.

When you see me looking energetic and getting things done, what you don’t see is that this is the first good day I’ve had in weeks.

When you see me on vacation, what you don’t see is how many activities I had to forgo in order to have a little bit of fun.

When you notice that I’m a little quiet, what you don’t see is that I’m expending all my energy just being physically present.

When you see me at the doctor’s office, what you don’t see is that sometimes I practically live there.

When you see me looking tired, what you don’t see is that pain has kept me awake the last four nights in a row.

What you don’t see is that some days my pain levels are low and I can pretend I’m normal, but other days it’s all I can do to get up off the couch. I never know what kind of day it will be.

If I don’t look like I’m paying attention, what you don’t see is how the pain has taken over everything. What you don’t see is the guilt I live with every day.

When you talk about how anyone can do anything they want to do, what you don’t see is how much that hurts me. Because unlike you, I can’t do anything I want.

When you judge me for not doing enough, what you don’t see is that I’ve actually done too much.

What you don’t see is how physically, emotionally and spiritually draining having a chronic illness can be.

What you don’t see is that I have the same wants and desires as a healthy person.

What you don’t see is that I’m doing everything in my power to improve my health, it’s just not working.

Follow this journey on Chronic Mom.

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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