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.
Here are some tips to try out:
- Plainly state the less-than-obvious. When someone says, “You look great today” and you are feeling horrid, you can be honest without being a whiner. Say cheerfully, “Well, half isn’t bad, but it’s a shame I’m not feeling great!” Then move on to other subjects.
- Offer a visual clue. If you use a cane or have a handicap tag, consider displaying them even on your less awful days to let others know you’re not feeling 100 percent.
- Describe your limits in terms someone can visualize. Ask people in your life to read my post explaining how it feels like having a gas tank low on fuel. Or another writer’s clever description using teaspoons as a measure to explain how it feels to suffer with lupus – we’re all in the same low-energy boat.
- When someone asks how you are, don’t offer the polite falsehood “Fine.” Use a scale of 1-10 for a quick but clear answer. Explain that 1 is normal, 10 means unbearable. I find I don’t need to give people the entire symptom list of the day—it’s enough that they understand I’m at 8 while they are feeling super at 1.
- Don’t hide out on all of your bad days. If someone close to you wants to visit on one of your worst days, maybe even a bad herx day, let them—if only for a short while. If they only see you on better days, they’ll won’t fully understand.
There must be plenty more I’m not thinking of. So please share tips you’ve discovered below.
Friends and family: Click here to read “Six Common Misconceptions About the Chronically Ill” in Psychology Today.