9 Things People With Lyme Disease Wish Others Understood

Lyme disease is a condition that can affect anyone who’s been bitten by a tick that carries the disease. In the U.S. alone, an estimated 300,000 people are diagnosed with Lyme every year, according to The Centers for Disease Control and Prevention. Despite this number, the condition is widely misunderstood and worse, often goes undiagnosed.

The Mighty teamed up with ProHealth, a website with resources for people with chronic illnesses, to ask our readers affected by Lyme disease what they wish others understood about their condition.

This is what they had to say:

1. “The accompanying fatigue goes well beyond the commonly accepted experience of being tired. Lyme fatigue is unrelenting, debilitating and omnipresent. It crushes the ability to function and mocks the aspiration of a better tomorrow. Everything else — nutrition, hygiene, education, employment and a social network — disintegrates under its shroud.” — Cotton Rayne

2. “It’s hard to find good care.” — Jessie Rivera Merriam

3. “Isolation and depression can occur when you cannot leave your house… sometimes you can’t leave your bed.” — Jeanne Hart

4. “[I wish others understood] the loneliness, silence and being shunned [I experience], all while being scared and literally out of [my] mind… You fight for your life researching because doctors are completely ignorant about Lyme and your family and friends don’t believe how sick you are.” — Katharine Jordan

5. “I could not even chew from the pain and weakness.” — Elaine Calabro

6. “[I wish people understood] the boredom. My mind is hungry, but my mind is compromised.” — Toni Tester

7. “Things change on a moment-to-moment basis.” — Karyn Yingling-Berry

8. “It can happen to anyone!” — Carol Glasen

9. “It’s real.” — Bettyanne Mauceri

If you have Lyme disease, what’s one thing you wish others understood about your condition? Let us know in the comments below.