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The Worst Lie in Chronic Illness

Audrey Kawalski Dishonest Heart
As chronic illness sufferers, we are so often reminded of something that I believe is of great detriment to our well being. When well people tell us that our health struggles, our personal challenges, the great storms of our lives “will some day be of use.”
I’ve grown to loathe this idea. I realize that it is meant to be an encouragement, however, it causes myself and my brothers and sisters in pain deeper despair. “Some day?” It’s as though they are reminding us that we don’t have as much to give until we are restored to health. I completely reject anything of the sort!
I believe that you and I are worthy and valuable just as we are. Yes, right now. You were no more “special” when your nervous system was working properly, but I can attest that the memory of wellness certainly has a shining halo around it.
We feel so small and insignificant after illness devours our lives, and those we love in its wake. There is no “after the tsunami lifts” with chronic illness, as we are always seeking out cover, our safe places are constantly being destroyed, and the physical and emotional turmoil can feel endless. My personal peace rests in God, a relationship which has grown inside of my own tsunami.
This message of purpose is one I try to frequent on this page because I struggle so deeply with the whispers that my life isn’t enough, I should be doing more, and I would be so much more valuable as a person if only my body worked again.
This is my pride speaking!
In those moments when the whispers win, I have forgotten how many opportunities I’m supplied with to have an impact, even in the very midst of my personal battles. Maybe, and probably because of my personal struggles, I’ve been allowed these chances. What seemingly small opportunities and connections might you be taking for granted in your own life?
The next time someone reminds you that all the pain and struggles you are battling will be worth “something” some day, please remind them that pain doesn’t have to stay hidden, and that your time traveling the path of illness is not a waste.
I don’t believe we have to wait until we’re perfect for our lives to have value. If that’s true, then I guess we will all be waiting forever!
Are we meant to see the silver lining in every storm before God can give us purpose through it? Even in the very midst of the battle, your story, your experience, your willingness to relate to and comfort others is so rare and valuable that it stands out among the noise and busy crowded world we live in.
It’s so easy to withdraw when the going gets tough. In time, however, we feel so marginalized and isolated. You do have a voice. Your story, your purpose, your personal gifts matter- and you are needed in this world.
We greatly undervalue the quiet connections, asking others how they are and actually listening in return, sending a note by mail to a struggling friend, or letting someone know they’ve been in your prayers.
Society does not measure these acts as successes, but what if you redefine what success means in your life? You may have very little energy to spare, but what you have to share is precious.
I believe God’s measure of success looks much different than our own. We become so focused on perfection, staying hidden until the right moment to present ourselves shiny and clean, having overcome our difficult and uncomfortable circumstances. This is what the rest of the world applauds. But don’t we each have unique and valuable lessons to share that come with the daily perseverance of ongoing trials?
It’s one thing to be crippled by a body that relentlessly fights against you, but please don’t believe the lie that you are less-than or it will cripple your spirit.
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You are Never too Messy to Matter
You are Never Too Messy to Matter
Over the last 10 years of chronic illness, people have told me that I will be healed if my faith is strong enough, that I am being prepared for something greater in my future, that all of this pain, loss, and disability will be given a special meaning some day. But, I believe that our lives are meaningful even in the midst of the darkest struggles. We don’t have to wait until life becomes perfect to attain purpose and perspective.
In the first couple years after I was diagnosed, college friends told me praying harder would heal me, one suggested the sins of my parents or grandparents may be expressed through my illness, family members sent me books about focusing on God’s healing promises, and I was prayed over for healing at church more times than I can count.
I was so angry and frustrated at everyone! God wasn’t healing me, I was getting worse! Why didn’t they understand? But no one did… I felt all alone to face this new monster eating away at my body and taking down my dreams and abilities one by one. I had such a strong confidence in my purpose, in my “calling,” and I didn’t know why those passions would be given to me, if only to be ripped away.
I do believe God has the power to heal my body. I also believe that healing can come in other forms as well. I used to pray and pray for my body to be healed, for the horrible pain to go away, and for my life to go back to the way it was. Of course I did. Of course I want my pain to go away and for life to be easier. Everyone in pain wants that! As life became a one-day-at-a-time struggle for survival, talking to God changed also. My heart desired to be of service to others (on support groups, online, in my relationships, etc.). Over time, I realized those prayers overtook the ones begging for physical healing. I believe there are different kinds of healing beyond physical wholeness that I hadn’t thought about before chronic illness, or during my first years living with it.
In each of the instances with my friends and family, they were showing up in the only way they knew how to offer hope and support. I’ve since learned that the people who show up are the ones to hold onto- sometimes they take some time and guidance to figure it out though.
During the storms in life, it is so common to be told that when the storm lifts, we will use what we’ve learned to help someone else, or we will have a greater sense of clarity. Well, when the rain doesn’t let up, when your body is constantly beating you up, if you are terminally ill, there is no waiting for healing to make use of your life today. Loss of health forces us each to look at our mortality and time in a new way. The desire to make a difference in the world doesn’t stop just because one’s legs, nervous system, or liver is failing. For so many remarkable individuals I have met over the years, illness can even inspire a new-found purpose, passion for growing in new ways, and redefining success based on what they hold most precious vs. what society has told them is of importance.
If you feel as though your purpose has been lost, and you don’t know why your life has taken this sudden detour, please know that you are not alone, and you are still on a path that is your own. You have not been forgotten. Your life still has meaning, even now- even in the mess you feel you are going through. You don’t have to wait for the perfect body and perfect life to be useful. If I had waited for that kind of moment, I think I would be waiting for eternity! Even in the middle of your struggle, your story matters. What you are going through matters.
“Waiting for my Real Life to Begin”
Woke up with this song weighing heavy on my heart and in my head. Just because I cannot listen doesn’t keep music from playing inside of me. If you are like me and have trouble listening to music, the video includes the lyrics.
The second verse: “When I awoke today suddenly nothing happened.
But in my dreams I slew the DRAGON” plays into living with chronic illness and life now from a bed. But just as Colin Hay’s “love” keeps telling him to let the sun shine in and keeps reminding him there is already a plan; this is the same knowledge I have that God has a plan for me also. Not just in the future, but right now… I’m living it. My real life has already begun- even when it’s hard to feel it.
Sometimes we keep waiting for everything good to start up, and our purpose is right there in front of us. God bless you.