Some Things are Better Left Unsaid

I started this blog several months back to help me channel some of my “energy” into something productive. I’ve shared quite a bit about how Lyme disease has affected our family and I’d like to be able to say that I hope I haven’t scared you. But I can’t. I hope that I’ve scared you enough…enough to do tick checks more than occasionally or when you think about it; enough to teach your children and grandchildren how to effectively check for ticks daily; enough to take any tick bite seriously; enough to question your doctor about Lyme disease; enough to know that you can’t just go by what your doctor says about Lyme disease; and finally, enough that you have just a bit more understanding of how individuals and their families live with Lyme disease.

I’ve raised some eyebrows with the information that I’ve shared, and on more than one occasion I’ve heard, “Mom, did you have to write that?!”. I shrug, apologize, but don’t feel the least bit sorry. Because I haven’t even shared half of what this horrific disease can do to a person and their loved ones. I just can’t do it, because not all of you have Lyme-colored glasses, and you wouldn’t see things as we do. It would be like watching someone you know shopping-someone who you know was convicted of shoplifting. You never look at them the same way again.

You can’t “sugarcoat” Lyme disease and to do so would be a great disservice to those who deal with it. There is nothing sweet about a headache that never goes away, throbbing joint and muscle aches, stabbing pains that hit from out of nowhere, thick brain fog and seizures, and so many other issues that most of us just couldn’t handle. Lyme disease is definitely not for the faint of heart –which, by the way, is also affected by Lyme disease. It’s really important to understand, though, that people with Lyme disease don’t want your pity. They need your understanding, compassion, acceptance, and love. They need stability and support as they fight a disease that leaves them feeling lost and hopeless, drained and empty. There are times I’d like to give my sweet daughter a swift kick in the pants because she hides so much of what she’s going through — because she doesn’t want to be the sick kid nobody wants to be around. She has trained herself to hold in violent muscle twitches, to smile through intense nausea and deep fatigue, and to laugh when what she really wants to do is cry. She’s had to deal with so much more in the last five of her 18 years than you could possibly imagine. Life, as she planned it, has stopped and she can never go back to that exact place to start over again. Life, as we knew it and expected it to be, came to a crashing halt, and contrary to what you might think, you can’t go back again.

We ran into a good friend the other day who put our experience with Lyme disease into a very succinct phrase: “Some days are good days, some days are bad days, and some days I can actually tell the difference.” I could share some “bad day” stories that you’d never forget and tell you about all the neurological complications of Lyme disease, but then every time you see us, you would see the shoplifter that no one forgets or the sick kid that everyone feels sorry for. So I won’t share all the details of this nightmare with you, because some things are better left unsaid.


1 Response so far »

  1. 1

    Jodi Fischer said,

    Your family has been through quite a bit because of Lyme. Praying that better days are ahead. Just keep on keepin’ on… You are doing a great job as mom/doctor/nurse/researcher!

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