Because I’m not merely “tired” when Lyme gets me in it’s grip, I’m far beyond that. Tired is what happens to well people who overdo. It’s what happens to heroines in Victorian novels who faint on chaises.
Isn’t there a better pronouncement for what happens to people with chronic illness—sometimes even when we do nothing at all?
In my opinion, “chronic fatigue” is so overused it has no meaning. Continue reading →
Two things in particular sustain me: natural beauty and friends.
For a long time now, I’ve been in a place where viewing the lives of friends through the window of Facebook is incredibly painful. What’s wrong with me? Why can’t I just enjoy the happy happenings of others instead of being overcome by my own piercing grief, frustration, and regret?
I checked my page today and saw a lot of posts from folks, many of whom I have not seen since I got sick. They’re experiencing all kinds of major life events. Meanwhile I’m facing major limitations.
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Actually, I’ve learned many people need a little help from me to truly see the pain.
Lyme is known as an “invisible” disease. That’s because oftentimes we look pretty good on the outside despite feeling myriad symptoms inside. And—unfortunately—many of us are darned good at keeping those symptoms invisible.
My own reasons include:
- I don’t want those around me to worry.
- I don’t want people to know how sick I really am because I’m afraid they’ll abandon me.
- I hate the thought of becoming that depressing person who is constantly complaining about how crummy he or she feels.
But I’ve come to see that a dose of reality is a good thing. When people understand the seriousness of this illness, they offer empathy and support.
Beyond that, we need others to know how serious chronic Lyme can become, so more people understand diagnosis and prevention—and stay well.
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“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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- Lyme is a roller coaster. Your friend or family member may make plans, then cancel at the
Credit: Courtney Fox
last minute because they’re suddenly overcome by illness, fatigue, pain—or an array of other symptoms. They are not blowing you off; in fact, they are probably intensely disappointed. Let them know you’re happy to reschedule.
- Lyme is debilitating. Imagine how frustrating it would be to find yourself unable to walk to the mailbox in front of your house, fix meals and empty your dishwasher, or drive yourself places. You can make a huge difference by offering help with a task or two.
- Lyme symptoms can be invisible. If you find yourself thinking, “My friend looks terrific,” catch yourself. Here’s the key: Ask, “On a scale of 1-10, with 1 being terrific and 10 the absolute worst, how are you doing today?” The answer may surprise you.
- Lyme hurts the bank account as well as the body. The sad fact is that insurance often doesn’t fully cover treatment for this disease. And Lyme patients lose income if they are too sick to work. Be sensitive to that; your friend may be spending every penny on getting well, with none left over for a movie or meal out. Suggest free things, or make clear your plan to treat.
Lyme makes eating a challenge. Some patients suffer stomach trouble from tick-borne infections and/or medications used to treat them. Plus, certain foods actually increase the inflammation at the root of their pain. Nutrition is key to healing. Your friend or relative will be so grateful if you get them a gift certificate for carry out or offer to make a meal—and ask which restaurants/foods are the best choice.
For more insight, you might want to read some of these posts – or just browse around yourself using the categories search on the right.
5 Gift Ideas for Someone with Lyme
5 Ways to Help Others “See” Lyme
Believing in Lyme When Looks Are Deceiving
and here’s an essay from Spirochick addressing an interesting disparity: Empathy: Cancer versus Lyme
For the latest news and research, visit www.facebook.com/LifeLoveLyme.