CANCER VS. LYME DISEASE: WHY "AT LEAST IT ISN'T CANCER" HURTS
A friend of mine with Lyme reached out to me this week because people keep telling her, "At least it isn't cancer." This hurtful comment is all too common. Diseases don't need to compete, and hearing this belittles people. It makes light of their suffering and of how serious Lyme and co-infections can be.
WHY "AT LEAST IT ISN'T CANCER" HURTS
- First, cancer is truly awful, and nothing in this post is meant to take away from anyone's cancer journey. This isn't about which illness is worse. It's about why this comment hurts, and why Lyme deserves to be taken seriously too.
- The difference is often in how other people respond. Cancer is widely recognized, so people usually listen. People with chronic Lyme are often doubted by doctors, insurance companies, and even family and friends.
- In 2014, LymeDisease.org shared the story of a woman whose father lived with late-stage Lyme for many years before he died. She wrote that when people heard he had chronic Lyme, the answer was often "Well...at least it isn't cancer." She explained that with cancer, people listen, and insurance is more likely to cover treatment.
- With cancer, doctors understand the disease and how to treat it, and no one tells a cancer patient that their disease doesn't exist. Many people with chronic Lyme are told just that.
- So when someone says this, what a Lyme patient often hears is: "Your illness isn't that serious, and you probably don't suffer as much as people with other diseases."
HOW HARD CHRONIC LYME CAN BE
- These numbers simply show how much chronic Lyme can take from a person's life.
- In a large survey of 3,090 people with chronic Lyme, published in 2014, 72% rated their health as fair or poor, compared with 16% of the general public. That was worse than every other chronic illness in the comparison, including congestive heart failure (62%) and fibromyalgia (59%).
- Chronic Lyme patients in that survey also reported more days of activity limited by pain than published numbers for people with cancer (16.5 days a month compared with 13.1), and more days of not feeling rested (20.3 compared with 14.5).
- They also reported more bad physical health days than published numbers for people with chronic low back pain, asthma, diabetes, depression or heart disease, and about the same as people whose cancer limits their activities.
- About 42% had stopped working because of Lyme, and 25% had to cut back their hours or change the kind of work they do.
- Government-funded (NIH) treatment trials published in 2001 found the quality of life of patients with persistent Lyme symptoms was as low as that of people with congestive heart failure. A past ILADS president pointed to these trials as proof of how serious chronic Lyme is.
- In 2025, the National Academies of Sciences, Engineering, and Medicine reported that about 10 to 20% of people with Lyme go on to have lasting symptoms such as pain, exhaustion and brain fog that can be debilitating. It also noted there are still no treatments proven safe and effective for these lasting symptoms.
"THE INFECTIOUS DISEASE EQUIVALENT OF CANCER"
- Dr. Neil Spector was a leading cancer doctor and researcher at Duke. His own Lyme went undiagnosed for years. The long delay badly damaged his heart, and in 2009 he needed a heart transplant to survive.
- Knowing both illnesses up close, he said: "To me, Lyme is the infectious disease equivalent of cancer."
- He explained that cancer isn't treated as one single disease anymore, and Lyme shouldn't be either. He pointed out that, like cancer cells, Lyme bacteria may find ways to resist treatment, and that both may need more targeted treatments.
- In the mid-2010s, Dr. Spector started Lyme treatment research at Duke using drug discovery methods that had worked for cancer. The Bay Area Lyme Foundation later gave more than $2 million to Duke to continue that research in his honor.
BEING DISMISSED MAKES IT HARDER
- A 2024 Johns Hopkins study found that being dismissed by medical professionals is common for people with lasting Lyme symptoms. About half had first been told their symptoms were something else.
- The more dismissal patients reported, the worse their symptoms and daily life tended to be, and the less they trusted doctors. Women and younger patients reported more dismissal, but men are dismissed too, and their suffering is just as real.
- The 2025 National Academies report also noted that people with lasting symptoms after an infection commonly face stigma and have their symptoms minimized, both by others and when seeking medical care.
LYME IS NOT RARE
- An estimated 476,000 new Lyme cases happen in the U.S. each year. That's more than HIV and breast cancer combined.
- Still, Lyme doesn't get the same attention or funding as other serious illnesses, and many patients feel invisible.
DISEASES DON'T NEED TO COMPETE
- Whether someone has cancer or late-stage Lyme, their illness deserves to be believed.
- Instead of comparing, try simply saying, "I'm so sorry you're going through this. What do you need?"
- Believing someone is one of the kindest things you can do.
RELATED POSTS
DISMISSIVE DOCTORS / MEDICAL GASLIGHTING
CHRONIC LYME
WHY YOUR SUPPORT MATTERS: A GUIDE FOR LOVED ONES
SOURCES
LymeDisease.org - Emily Reach White, "Lyme? At least it isn't cancer" (August 2014, older source, still worth reading)
PeerJ - Johnson and others, Severity of chronic Lyme disease compared to other chronic conditions: a quality of life survey (March 2014, older source, still worth reading)
Interdisciplinary Perspectives on Infectious Diseases - Dr. Daniel Cameron, Proof That Chronic Lyme Disease Exists (May 2010, older source, still worth reading)
National Academies of Sciences, Engineering, and Medicine - Charting a Path Toward New Treatments for Lyme Infection-Associated Chronic Illnesses (May 2025)
National Academies of Sciences, Engineering, and Medicine - news release on the report (May 2025)
HuffPost - Dana Parish, Lyme: The Infectious Disease Equivalent of Cancer, Says Top Duke Oncologist (February 2016, older source, still worth reading)
Duke Health - Aliza Inbari, $2 Million Bay Area Lyme Foundation Grant to Benefit Lyme Disease Research in Honor of Neil L. Spector, MD (September 2023)
Scientific Reports - Rebman, Yang and Aucott (Johns Hopkins), Invalidation by medical professionals in post-treatment Lyme disease (August 2024)
LymeDisease.org - Nancy Dougherty, When Lyme patients must fight to be believed by doctors (September 2024)
Global Lyme Alliance - Jennifer Crystal, Lyme Disease Isn't Rare, So Why Does It Still Feel Invisible? (March 2026)
Global Lyme Alliance - Jennifer Crystal, The Comfort of Solidarity (June 2020, older source, still worth reading)
Global Lyme Alliance - Jennifer Crystal, Wondering What to Say to a Lyme Patient? Try These Conversation Starters (November 2020, older source, still worth reading)
Disclaimer: Rise Above Lyme makes no claims about any possible benefit of using any product mentioned within this site. Always consult with your doctor before adding anything. The information shared is based on personal experience, years of accumulated researched resources from Lyme Literate doctors and polls conducted within Lyme groups from actual patient experience using these solution ideas.
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