With chronic illness, you are the expert in your own body!

I don’t know about you, but sometimes I wonder if doctors are listening to me. Sometimes, it seems like what I say is being heard (i.e. – my body is making sound waves that travel through the air to the doctor’s hear). But at the same time, the doctor is not really listening (i.e. – concentrating so the brain processes meaning from words and sentences).

Or maybe doctor’s are listening to me, but the meaning they understand from my words is not really the meaning I wish to convey.

Perhaps doctors don’t listen because I’m not being clear. OR more likely, perhaps the meaning a doctor understands is not full and complete because THEY HAVE NEVER LIVED WITH MY ILLNESS IN MY BODY. So when I say my face flushes, for example, they might take that to mean my face gets red. When I might really mean, my face gets red, feels like it’s on fire, and causes the rest of my body to feel like it might burn up from the inside out. Same word: “flushing.” Very different understanding.

So today, consider how you’re communicating with your physicians, but also remember that you are and always will be the expert in your own body! Just as we must learn to communicate with doctors so they really hear what we’re trying to say, we also need to learn to do so with a sense of self-advocacy. A doctor’s job is to understand the science and technique behind wellness. But that doesn’t make them omniscient. Sometimes, even within illness categories, what works for one might not work for another. It’s okay to tell a doctor something isn’t working for you. (Of course, give it time if it’s a treatment that needs it!) And if you have suggestions, gather the courage to bring them to the table. You are the expert in your own body. Live that way!

Why My Child with Chronic Illness is My Hero

The day before her 11th birthday, my daughter was diagnosed with a chronic illness. Since a child, she has dealt with a chronic condition, and often experiences debilitating symptoms. Certainly her life has been good, but her childhood has looked different than most kids’…because everything changes when you’re sick.

Chronic illness isn’t for wimps! That’s established. But when everything changes in your life due to a diagnosis, you can either choose to be brave or you can choose to let symptoms control you and your life. How you live with chronic illness is a choice.

That’s why my daughter is my hero! Here’s why:

  • She lives courageously! Whether it’s summoning up the strength to make it to school, to face another medical appointment or to use her creative gifts, she does it with courage. She knows her limits, yet she pushes her boundaries to have the life she wants. She doesn’t quit on life when it gets difficult or even overwhelming. Every good day is used to its full (to say, go to school or even visit Disney World), and every bad day is an opportunity to regain her strength (and perhaps to check in on the latest adds to Netflix).
  • She acts bravely! Though she is sick, her actions toward others rarely reflect a sense of self. She reaches out to friends in need, serves her community and stretches herself in order to provide for others. Right now my daughter is coming alongside a pregnant friend, volunteering every weekend at church and training for a half-marathon to raise money for Hope Water Project to provide clean water for the Pokot tribe of Kenya. And none of these things were my idea! She is putting aside (or working through) her own chronic pain and illness to make a difference in others’ lives!
  • She embodies strength! Sometimes, for someone with chronic illness, strength is conquering your fears. But sometimes strength is just getting out of bed. I have seen my daughter display strength in both situations! If you know what it’s like to live with chronic illness, then you know what it’s like to be afraid. Afraid of not being able to function. Afraid others won’t understand your limitations. Afraid a good day will quickly turn to bad. I’ve seen my daughter manage her fear and embody strength simply by dealing with each moment as it comes.

That’s why my chronically ill daughter is my hero…because she is uncommonly brave!

 

Three honest reasons you can face chronic illness with bravery

No one sets out to be sick (unless you’re a hypochondriac or have some other similar psychological impairment). We just don’t welcome illness like we do a best friend or a long lost loved one.

Yet, chronic illness snuggles up next to those it chooses with little regard for their thoughts on the matter. And it can be daunting to face. No matter where you are on your journey with chronic illness, having less control over your body and thus less control over your life can be frightening. Fear is an insidious thing. It gets in our heads and hearts and works hard to convince us that we ought to lay down and just stop…stop trying, stop living and even stop loving. Fear can paralyze you.

That’s where uncommon bravery comes in. Being chronically ill isn’t for sissies! It often requires more strength and more courage than the average man, woman or child musters up on a daily basis. It forces us to become above average…to be brave.

So, what are the three honest reasons you can face chronic illness with bravery? Easy.

  1. You survived life thus far. A diagnosis doesn’t change that.
  2. Your strength (though it may waver) can only get stronger as you learn how to navigate your unique illness.
  3. You still have a contribution to make to the world. Sick or well, you matter! And what you bring to the world is still very much in need. Being sick doesn’t need to define who you are, so don’t let it.

Become brave…the easy way or the hard way! Because one way or another, you must face your illness. I choose courage. I choose the easy way.

How to Stop Pleasing People

It is impossible to please everyone. Yet, when you develop a chronic illness, this fact seems more powerful than it did in the time before illness. Because sometimes when you spend your days simply hoping to make it out of bed, you feel like you cannot please anyone…even yourself. But that doesn’t mean we don’t try!

So, let’s commit to making a change. Let’s work on living from our own personal priorities, instead of working to make everyone happy. Don’t have personal priorities? Now is the time to decide what you value most. Because our values help us make good decisions when we’re feeling great and when we’re having an incredibly hard day. Pleasing people = no. Living by our values = a resounding yes!

Brave

Christopher Reeve said, “A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.” That’s what this blog is all about. And how fitting this quote is from the actor we all know as Superman…for he himself fought chronic illness and pain. This blog is for those of us who have any type of rare, undiagnosed or chronic illness, or for caretakers of those with chronic symptoms. And hopefully, it’s a place where you are regularly reminded you are braver than you realize and stronger than you know. You are someone’s hero.