When Others Can’t See The War

It came to me today as I have been reflecting on how frustrated and worn out I have been lately with this multi-decade battle with illness that I am at war every moment of my life….with myself.

THIS is the essence of an autoimmune disease….with chronic invisible illness, being in an internal battle every day of your life with your body. This is what is hard for others to understand when they observe you from the outside when looking at you or talking to you. You seem normal, you are “functioning”, besides the fact that you tell them that you are horribly fatigued, or in pain, or can’t eat most foods, or can’t climb those stairs, or can’t hang out this weekend….
What they don’t see is that you and yourself really don’t get along that well and it feels that you are an alien to your very body and can’t escape the constant pain or inflammation or discomfort and your very waking existence is a trap inside a contraption that causes unending suffering.

How do you explain this to people? How do healthy people who have only occasionally been sick with the seasonal stuff even begin to contemplate a myriad of systemic symptoms that don’t just run their course and stop? Maybe if we played the Groundhog Day game and asked them to imagine the worst day they can remember with something like the flu and then picturing they had to live that day over and over for year after year.
I hope posts like this can help teach those who know people who are suffering inside in what we go through and how it feels.

Sigh. Can you tell I have been a bit frustrated lately?
Yes I have made progress. Yes the Lyme and Coinfections are getting better. But I still have a lot of things to pursue with why certain things aren’t getting better. But I am on a good track with finding a new ND clinic that works with genetics, food allergies, gut disorders, and autoimmune conditions. They will work on the pieces that my Lyme doctor cannot and I am having a ton of tests.
There is always hope isn’t there?

(Pic of my pup because she makes me happy)

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7 thoughts on “When Others Can’t See The War

  1. Love the Happy Pup, My Lulu is my best friend she too makes me Happy. I agree with you, how to explaine… I find I explaine little. It makes me feel like a whiner/hypercondriac or like how could one person have all that going on in one body, all day, every day!! Cause it does just sound that damn crazy! <<< That is the crux of it too…Imagine feeling like that everyday people, our body is just crazy inside it can throw anything our way…Achy arm any one, how about a useless leg today, or maybe a migraine with stiff neck, and dizzy spells! Or myabe your neck is out you can't turn and look left for the next month with out excruciating pain. Constant fatigue is now your best friend, not to mention how tired all of these off the wall symptoms will make you feel, then add in nightly bad dreams, and the inability to sleep anyway oh yeah and sleep apnea/hypopnea…This list could go on and on it is utter chaos, I call it scared to live in my own skin. I just say I don't feel well and leave it at that, let them think what ever they want. I don't have the energy anymore to care! Work in progress Mystical Luna Rose…

  2. Most peeps are too absorbed with their own lives and families to care more than a moment for one who is suffering, who cannot be fixed with a donation/ministry/single phone call to you once every year or so. It is a tough road. It is a road none of us would choose. It’s not a road for wimps, that is for sure. Its ‘s journey for road warriors like us. Frankly I would not value a superficial life much anyways! We know the value of a moment, the treasure of the warm look in the eyes of our pups, the joy of a few hours of “near normal” from time to time. Thank goodness the Lord sees our strife and promises that it will not last forever. And therein lies our hope.

    I sit here in a most debilitated state, resonating with what you have shared Jennifer. We got this, lady. I’ll be praying for you! With love, Julie

  3. It is incredibly frustrating 😦 It really IS alienating to be around people who are functioning just fine when you exist in such a different reality…I feel like this everyday when I am at school in the library, or in class. It is SUCH a struggle for me to get through a single class, yet the majority of other people are energetic and capable. Definitely isolating. And frustrating! Everyone is drinking soda and many look unhealthy, yet they don’t have chronic disease (at least not yet). Meanwhile, I’m drinking beet juice and worrying if it has too much sugar and feeling like I’m dying! I saw you mention that your sister also suffers from Lyme. I’m sure you are familiar with this by now in your journey, but have you had your genetic mutations looked at? All my siblings have been ill, and my sister and brother had Lyme also, I found out we carry a number of genetic mutations that need to be addressed before we can get better. I also grew up in a house with mold and right next to fields that were routinely sprayed with pesticides (via a helicopter) and believe this set the stage for my chronic lyme and mold issues… sending healing thoughts.

    • Hi Kris, it is horribly frustrating when other people just can’t get what is going on inside.
      You are absolutely right that genetics need to be addressed. My family has found a clinic that specializes in this and I actually have my genetic consult appointment this week.

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