lymeoutlyndsey

My journey through Lyme Disease- Healing my body and mind.

“You don’t look sick”


Many people with chronic illness, be it Late-Stage Lyme, MS, Fibromyalgia, etc, often hear the phrase “you don’t look sick” from well-meaning friends. I have heard it so often from so many people that I think it deserves just a little discussion.

First of all, thank you. It’s a compliment to say that I don’t look sick and I appreciate that. However, there are many times that this phrase is said with a confused stare. You haven’t seen me on my bike and you know I’ve been sick, but you don’t see any immediate evidence of illness. It’s true. I don’t have bruises on my face or snot dripping out of my nose. Many people dealing with Late-Stage Lyme have many symptoms that come and go. Although I live with a few symptoms that are relatively constant, such as fatigue and some level of pain in my body, my debilitating symptoms come in waves.

If you are seeing me out and about, it means my symptoms are manageable enough to talk, laugh, smile, and play without being too distracted by them. Yay! Those are good days!

Only a few “lucky” friends (but mostly my partner) have had the chance to see me on days where I am passing out from abdominal pain, having trouble with memory, speaking, balance, fine motor movements, involuntary head and muscle twitches, migraines, blah, blah, blah….all the good stuff. Thankfully, most of those days are during the week since I tend to switch medicines on Mondays. My symptoms can change day to day or even hour to hour. Sometimes I struggle for a few days and sometimes I feel “good” for a week or more! Things that I have noticed trigger my symptoms are: less than 8 hours of sleep, stress, too much exercise, medication changes, and diet changes. Sometimes it’s just random with no clear cause.

My point here is not that you shouldn’t tell me how good I look. Everybody likes to hear that, right? But, hopefully the confused looks will diminish. Hug your friends with chronic illness that you may not fully understand (there are too many of us) and just say- “It’s nice to see you”.

My recovery is coming along nicely and you will see me out and about and hopefully playing way more often than not. Hooray!


7 responses to ““You don’t look sick”

  1. Megan Cahill says:

    Hey Lyndsey, congrats on what looks like a successful road to recovery. Also, you are so strong! Lyme disease is one of many conditions that can go undiagnosed or misdiagnosed as you discovered. I grew up on the East coast where ticks are abundant and we were always in the woods. My brother was diagnosed with children’s arthritis and/or cancer at the age of 10 due to unexplained generalized weakness and loss of musculoskeletal function. My family was devastated as he had to be in a wheel chair and was acutely confused. In the 80’s, barely anyone knew what Lyme disease was and my parents had tried many different doctors until someone finally recognized the symptoms as Lyme disease. All those ticks my mom had pulled off of my brother had left a mark. By going through similar treatment as you, he recovered fully within a year and has never had any other repercussions (he is 33). Just wanted to share my experience with Lyme disease. It is a scary thing not knowing what is going on with your body and the reality is that modern medicine is still clueless to the various ways the human body behaves. Your story touches me and I’m sorry you have had to go through all of this but am thankful you have found an answer and that you are doing better.

    • lilneeds says:

      Thank you, Megan! I agree, it’s crazy how much we still don’t know. I am so glad to hear that your brother is another success story! Recovery is definitely possible, but you have to do it right. I am so thankful I have found proper treatment and am on the road to recovery.

  2. Stephanie says:

    You and I know I can totally relate! Thanks for putting this in words that make sense and hopefully reach out to others so they can better understand the confusion; why one day we are out and about with a smile, only the next avoiding calls and in bed. Sometimes I feel like I have multiple personalities and end up offending those who just want to give us positive feedback. A good hug and “it’s nice to see you” is perfect. I’m so happy for your good days and getting out on the mountain again!
    It was “nice to see you” and Rocky over the weekend, keeping you in my thoughts 🙂
    Stephanie

  3. Phil says:

    Hello Lyndsey, I can’t describe how much I appreciate how you have addressed this unfortunate experience. When I was 19 I broke my neck and was temporarily paralyzed from the neck down. Two years later, just as I was starting to regain total function of my body I found a tick ring and started to develop symptoms of lyme (numb face, splitting headache, pain, disorientation, weak immune system). It is hard to tell sometimes which symptoms I am experiencing, whether residual from my spinal injury or chronic from lyme but either way it can be very difficult. Like you say it comes and goes. I’m 24 now and I don’t look sick and sometimes that fact can actually seem to complicate things, although I obviously wouldn’t have it any other way. People don’t understand the pain but stories like your’s go a long way towards empowering everyone who feels this stigma., Thank you
    ~Phil

    • lilneeds says:

      Oh, thank you, Phil. I’m so glad you see the value in this. It is often easy to feel not completely understood when suffer from chronic illness. It is something that has taught me to learn how to hold both suffering and joy at the same time. Not an easy thing to do. Wishing the best for you! ~Lyndsey

  4. Simon Wyatt says:

    Hi Lyndsey,

    I live in the U.K. And in 2004 my wife and I enjoyed our honeymoon touring Europe, yes Italy as well!
    We parked next to a lake one night in a place called barbarino de mugello , Tuscany and slept in the car.
    My wife got out to go for a wee, she was Bitten in the crease of her legs,.
    The doctor put it down to a boil!
    Fast forward to now, chronic fatigue, me, fibromyalgia, she has had numerous symptoms and time off work.
    She has just had a nhs Lyme test which came back negative, but we are now going to go private and have our own tests done.
    We never even considered the bite was from a tick, but now we have a dog we are beginning to think it’s highly likely she has be wrongly diagnosed.
    I would love to hear your thoughts on this Lyndsey and any advice where to get proper tests done.

    Kind regards
    Simon and mandie wyatt

    • lilneeds says:

      Hi Simon-
      I’m sorry to hear about your wife. It’s a long difficult road, that’s for sure. As far as blood tests go, try IGeneX (http://www.igenex.com/Website/resources/testimonials/). They are a private lab that specializes in tick-borne illnesses. I was bitten by a tick and contracted Lyme Disease in northwestern Italy in a Lyme-endemic area. I’m hoping you can find answers soon! Perhaps sending blood to a private lab would be the next best step.

      ~Lyndsey

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