Believing in Lyme When Looks Are Deceiving

Credit: Lyme Chick's Facebook page

Credit: Lyme Chick

“You look great!”

Many days, I wince when someone says that to me. I want to shout in frustration “I FEEL AWFUL!” And when I try to explain, I want to hear “I believe you”—not “But really, you do look great!”

I’ve felt hurt because even those closest to me don’t see my suffering sometimes. But I’m realizing it’s hard for them to believe how awful lyme can be if I don’t clue them in. Especially when it comes to pain. 

Not long ago, my longtime neighborhood book group got together for a potluck dinner. I was just getting to the point in my recovery where I could leave the house occasionally. So I said I’d love to come if I felt okay. Especially because they let me off the hook when it came to cooking a contribution for the table, which I knew I couldn’t manage.

Happily, I made it to the dinner. A few days later someone sent around a photo that included me. By the time I checked my email, a couple of others in the picture had piped up, making jokes about how the picture should have been photo-shopped…the usual chatter of people who hate photos of themselves.

I’m usually one of them. But I opened the file and had to admit I looked, well—great. Yes, great.

The thing is, I felt like hell on the inside.

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At book group dinner: 1 on the outside, 7 on the inside.

I like to use a scale of 1-10 to express how I am doing. A score of 1 means normal, 10 means my pain and other symptoms are excruciating and unbearable.

On that night, I was at 7. Can you tell?

I was struggling to hang in there from the start, even though I’d rested in bed all day to be ready.

Major pain medication kept me going, but still a flu-like feeling and pain in my legs were pulling me down. I started off with some energy, but despite the low-key nature of the evening, I soon felt like I’d been hit by a bus.

First we gathered in the kitchen for appetizers, where I stood up with everyone else so I could be part of the conversation. Mistake. I was  so relieved when someone else sat down at the kitchen table; I quickly followed.

When dinner was served, I didn’t help carry dishes to the table, afraid I might drop them because of muscle weakness. At the table, ringing in my ears created an ever-increasing din as I tried to hear the dinner conversation. And I found myself struggling to follow and understand the conversation; inflammation in the brain is frustrating that way.

I did enjoy myself, as best I could. I was happy to break the isolation of being at home. And I was certainly glad to be part of a tradition of nearly 20 years—it was fantastic to attend such a festive occasion with old friends.  But I was running on empty.

The minute the last person put down their dessert fork, I asked my date to take me home. I envied those lingering at the table talking, but I had to go.

When someone said, “Can you wait a minute for a photo?” I felt my stomach lurch with anxiety; all I wanted to do was be home in bed. I managed another five precious minutes and pasted on a smile—and I’m glad I did.

Not just because it’s great to have a wonderful reminder of yet another annual book club dinner, but because of what that photo taught me. I still can’t believe how well I looked on the outside, considering the symptoms raging inside my body.

Now I have seen myself as others see me. No wonder they don’t get it.

Next time, I’ll be candid and say, “I’m about 80 percent—or  50 percent, or 20—today, I’d better sit down. Will you join me?” I’ll take care of myself, and clue people in at the same time.

It’s so important to make this often unseen disease visible so others can believe. Simply put, it’s up to us to show them.

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5 thoughts on “Believing in Lyme When Looks Are Deceiving

  1. Anonymous January 14, 2013 at 9:57 pm Reply

    What an insightful piece. I think this could be about many of the “invisible” diseases. Thanks for sharing.

  2. Tina January 16, 2013 at 2:00 pm Reply

    I get this all the time! People who really know me see the difference in energy. I am a pretty active person and very independent, but I still look pretty normal on the outside so it confuses people who don’t know me. In fact I’ve had people say I am making it up…urg

    • LifeLoveLyme January 16, 2013 at 7:50 pm Reply

      So what’s a good retort when someone says you’re making it up?

  3. isabel January 16, 2013 at 3:01 pm Reply

    I realize I’ve been inadvertently doing this very thing….thank you for this very helpful insight!

  4. […] I thought I would share a picture which I found on a blog belonging to someone with Lyme disease (https://lifelovelyme.com/2013/01/13/believing-in-lyme-when-looks-are-deceiving/). I feel that the quote is very appropriate to multiple invisible illnesses, including ME/CFS and […]

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