Explaining to the lay person what chronic Lyme feels like

I have no doubt that my husband loves me but I know that it frustrates him when I try to explain that he will never be able to understand what I’m experiencing. After a great talk today I think I may have come up with a way that can help him at least wrap his brain around it. I thought I would share it with you all too.

Imagine the worst case of Mono that lasts for 3 months, leaving you unable to lift your head off of the bed or take care of your basic personal hygiene unassisted. Now add in excruciating joint pain, migraines, and constant nausea. On top of that your cognition is effected: you have lost your short term memory and your working memory is hampered (you can no longer manage complex reasoning and are unable to find the word your are looking for). You may or may not be able to read and write. Any allergic reaction sends you into a tail spin (because it makes sense that an immune response would trigger an autoimmune reaction) so you live in constant fear of mold/hay fever/etc. You may or may not suffer from chronic insomnia or you might sleep 23 hours a day (and don’t you dare say that you would love to sleep 23 hours a day!! That is arguably the cruelest thing you could say to someone with a chronic condition). Your life is stolen from you while you are in the prime of your life, leaving you broken and despondent. Many sink into deep depression. Your friends and family abandon you because you are no longer “fun to be around.” There are many other symptoms to add in but this gives you an idea…

Now multiply this by years.

Now you may have an inkling of an idea of what we go through and why we get upset when you say, “oh yeah. I get tired too.”

I hope this helps give a better picture of what it feels like to be trapped in the body of someone with Chronic Lyme. Was this helpful? Did I leave anything out? Tell me in the comments below.


14 Comments (+add yours?)

  1. rosebud25
    May 16, 2015 @ 17:04:04

    Reblogged this on The Cuckoo's Nest.


  2. Cynthia Barker Congdon
    May 18, 2015 @ 17:06:01

    This is brilliant… and yet, from my view of 8.5 years of this nightmare,you’ve barely scratched the surface. Thank you for expressing our common (Lyme world) feelings so eloquently!


    • Allegra Knight
      May 18, 2015 @ 18:26:51

      I didn’t want to traumatize folks (or for them to think I was speaking in hyperbole- because you know that if I gave them the WHOLE truth they’d never believe it.)


  3. The Person Next to You
    May 24, 2015 @ 15:43:02

    Well said.


  4. jeanvieve7
    May 27, 2015 @ 02:43:49

    Reblogged this on My Color Is Lyme and commented:
    In the midst of the worst


  5. maddyh15
    May 27, 2015 @ 07:16:52



  6. Trackback: Explaining to the lay person what chronic Lyme feels like | Liberation through #Lyme #chroniclife | The Ingredients We Choose
  7. chronically undiagnosed
    May 30, 2015 @ 14:54:34

    Yep I think you covered it! Thank you.


  8. Tammy
    Oct 07, 2015 @ 02:18:51

    SPOT ON!


  9. Priscilla Kirk
    Mar 25, 2016 @ 11:40:37

    You did a great job, & as you know people can be affected in joints, neuro, & muscle. The only thing that I noticed was no comparison with muscle. Killer muscle spasms. Waking up & not being able to lift hands over head, pick up that 8 oz glass water, not being able to beat your 9 year old daughter in arm wrestling, not folding clothes,
    Tremors to point family members want to feed you, your chips and queso. Causing severe face & jaw pain, with jaw tremors. Twitches & Jerks that have you always dropping your phone, because automatically opens.
    I have severe nerve, jaw, joint & muscle pain.Before started wearing pain patch I wake up at night, because I was having dreams, my legs were in a wood chipper…then I realized had dream, because legs hurting very bad, excruciating, really.
    If I don’t take 20mg Flexoril two, to three times a day I can’t open my mouth more than like a 1/2″ due to tissue inflammation, both jaw joints (they wanted to do “double jaw joint replacement” said it would be only way to remove affected tissue, straight bite, & resolve pain.
    Do to neurological involvement my esophagus no longer moves
    & on & on the story goes


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