The Worst Lie in Chronic Illness

audry kawalski dishonest heart

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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About abodyofhope

I do not know why it is that we must wade through tragic circumstances to find truth. We nearly drown! But under the water, there are pearls. I hope in writing this blog, more will come to the surface. Over the past 15 years living with chronic pain, patient advocacy has had a powerful effect on my life through meeting so many remarkable teens, women and men: SURVIVORS. These individuals are HOPE personified. I wish to honor them in the same spirit they have encouraged me to press on. Eight years ago, I became bed-bound from a variety of secondary chronic illnesses. A procedure meant to help the pain condition I had been managing for several years- went bust #BIGTIME. Over the years, my entire life has changed. I have changed, but I am still striving to live my best life possible. Along with sharing inspiring pieces about spiritual wellness and finding quality of life inside of ongoing illness, I also share health research, awareness information, poetry, memes, art, and this blog is also an attempt to put my own pieces back together. Welcome to A Body of Hope, and thank you for visiting. [Complex Regional Pain Syndrome/ RSD, Postural Orthostatic Tachycardia Syndrome (POTS), Dysautonomia, Chronic Intractable Migraine, Cluster headache, Trigeminal Neuralgia, Occipital Neuralgia, Hypersensitivity to Sound & Light, Fibro, CFS/ME, Cerebrospinal Fluid Imbalance......blah, blah, blah] >>> P.S. My headgear is protective for pain. I just rock it hard ;)

Posted on July 29, 2016, in Uncategorized and tagged , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink. 21 Comments.

  1. I love, love, love this post. Beautifully written and so very true.

    Liked by 1 person

    • I’m so thankful you connected with it, Beck! That’s the only thing I could ask for is that there is another soul out there who can relate to something I’ve also felt. Thank you for making my day!

      Liked by 1 person

  2. Thank you dear Mary, for expressing what many of us feel inside! 😊

    Liked by 1 person

  3. Just Plain Ol' Vic

    Thanks for writing this. It reminds me of what I need to do emotionally & mentally for my wife’s challenges.


  4. Mary, your words touch my heart. You tug at the emotional struggle people with chronic pain or chronic illness journey each day. Thank you for reminder that God sees our heart and the love we give to each other, whether through prayers, understanding words, deeds, or a simple gentle hug.Love you my sweet friend ❤

    Liked by 1 person

  5. Kimberly Owen

    As usual, a brilliant and heart felt blog post. You have put in print the thoughts that tend to run through my thoughts frequently.

    Liked by 1 person

  6. A very good and heartfelt piece. Thank you.
    I know I’m in the minority, but my position (horizontal, mostly, in the physical) doesn’t rely on hope.
    Yes, this is possible, and it’s not my invention.
    Translated from the Anglo-Saxon
    “Will shall be the sterner, heart the bolder, spirit the greater as our strength lessens.”
    (Said by soldiers facing a losing battle, who will neither run nor surrender.)

    Black humour helps (me) too.

    Liked by 1 person

  7. Wonderful post. I am so glad I read it. To tell you the truth, I feel like I am a much better person now that I am chronically ill. I am wiser, more compassionate. more loving, and have learned what really matters in my life. My priorities have changed, for the better.

    Not to say I was a bad person when I wasn’t ill, I was just very different. I was very career driven and missed out on a lot of things that I should have valued more.

    Chronic illness has taught me some of the most valuable lessons of my life.

    Liked by 1 person

    • Hi Lynn, I love your positive and grateful attitude! You have a lovely spirit I can feel through your words.
      Chronic illness doesn’t always allow the best attributes to shine forth. We have to make a choice every moment to seek out gratitude instead of seeing all the loss, choose to be forgiving with others instead of closed off, etc. Chronic illness is a stern teacher! I don’t think any of us get through it without learning many difficult life lessons which either grow us or shrink us down. We choose.
      Thank you for your thought provoking comment!
      Take good care.


  8. I agree with you; the implication of the statements made by those who still have their health is like saying we have to wait until we’re “over it” for our lives to be of use. I believe we can do important work now and that is much more useful in real-time than it could ever be in retrospect because people can be educated best when things are not candy-coated. The war quality of life in-progress is far more authentic than once it’s all over (and for many of us it will never be all over until we die).

    These blogs are a legacy that we can leave to others. Keep writing and educating the world! The more we let people into our world, the more the world as a whole improves!

    Liked by 1 person

  9. Thank you for sharing your life, all the wonderful and helpful information. There are so many things that you share that attach themselves to my heart and soul. Thank you for being you and as I send you feather hugs, remember always do what is best for you.


  10. You say people with a chronic illness/ chronic pain have a purpose, WTF is it?!?!? Sitting all day in agony, gradually rotting away the years, having no friends, no spouse and knowing that no one wants a relationship with someone who is fat, can’t work, cant stand up to cook, wash dishes, cries all the time…yeah that is a purpose? GIVE ME A FREAKING BREAK! You talk about how everything is soooo rosy with God on our side and that he is there for us? YEAH RIGHT. People in horrendous pain cant even get narcs anymore even if it is the only thing that will actually works. Instead the government is tearing the pain meds away from us! My dad is getting his narcs taken away because the government or VA says they are too addictive. He is already on non narc pain meds and is on maxed out dosages of these meds! THIS POOR MAN WONT BE ABLE TO WALK or FUNCTION WITHOUT THEM!! HE FOUGHT IN VIETNAM FIR THE GOVT NOW THEY TAKE AWAY HIS PAIN MEDS?!?! I CANT GET A NARC EVEN IF MY LIFE DEPENDS ON THEM!! I TAKE 6 DIFFERENT non Narc PAIN MEDS AND NONE OF THEM WORK. THEY BARELY TAKE THE EDGE OFF EVEN WHEN TAKEN TOGETHER! Not giving pain meds/NARCS to someone with chronic horriffic pain is like not giving insulin to a diabetic. I GUARANTEE THERE WILL BE MORE SUICIDES, MORE USE OF ILLEGAL DRUGS, ETC. Just because some people get addicted doesn’t mean we all do!


    • I’m so sorry you didn’t like my article, Lori. Even more, I feel terrible that I’ve upset you. That wasn’t my intention at all.

      You don’t deserve any of this pain and suffering that you’ve been dealt. Neither does your dad. It’s completely unfair to live an isolated life, left behind by everyone else while you continue to suffer.
      I truly don’t have a rosy outlook and I am tired of being ill, but I’ve come to believe that the things we do that we think are very small, sharing our stories, being there for one another- are much more meaningful than most people believe.

      Ableism in the world seems to cause healthy people to think chronically ill people like us have no value. But that’s wrong.
      I do strongly believe that we have value, and we’re just as worthy as they are of living our lives. To me, that means that we’re just as worthy as healthy people to have resources like medications we NEED to continue living, safe housing, and food. So many of us are living in solitude out of necessity, but for us to be treated the way government, healthcare, and society does is so very wrong, and disgusting. Do you agree?

      I’m so sorry that illness has stolen so much away from you. It means a lot that you commented, and I’ll take your comment into consideration when I write going forward.

      I’m very impressed by your passion to change the terrible pain medication guideline. Thank you for trying to make sure those of us with chronic pain have access to the meds we need! You have an important voice that we all need fighting for us! Thank you so much for spreading awareness and advocating for all of us on that very important, necessary issue.


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