Does Sex Matter in Lyme Disease?What Research Tells Us About Men’s and Women’s Experiences
When you live with Lyme disease, it’s easy to feel like no one truly understands what you’re going through. A new study from the MyLymeData project looked at thousands of people with persistent Lyme disease (those who remain sick six or more months after treatment). What they found is that men and women don’t always experience Lyme in the same way.
This research helps validate what many of my clients have already felt: your story may look very different from someone else’s, and that doesn’t make it any less real.
What the Study Looked At
Researchers reviewed reports from over 2,000 people with persistent Lyme disease. Participants shared about their diagnosis journey, symptoms, and daily functioning. The results showed some striking differences between men and women.
Key Differences Between Men and Women
1. Delays in Diagnosis
Women were more likely than men to face years-long delays before getting the correct diagnosis. Many had to see 10 or more doctors along the way. On top of that, women were more often misdiagnosed with conditions like chronic fatigue syndrome, fibromyalgia, or even psychiatric disorders.
2. Symptom Severity
Women reported more severe symptoms in many areas — fatigue, muscle aches, joint pain, sleep problems, headaches, and gastrointestinal issues. These weren’t small differences; they were strong enough to be statistically significant.
3. Impact on Daily Life
Women also described greater disruption in daily functioning. They more often needed special equipment, had more “bed days” (days where illness kept them in bed), and reported being disabled or unable to keep up with normal activities.
4. Treatment Response
Interestingly, when it came to how people felt about their response to antibiotics and the side effects they experienced, men and women reported no significant differences.
Why This Matters
This study confirms something many of you may have already sensed: living with Lyme disease isn’t “one-size-fits-all.” Gender and sex can shape the way illness shows up, how quickly it’s recognized, and how severely it impacts daily life.
For women especially, longer waits for diagnosis and higher rates of misdiagnosis can add layers of frustration, grief, and sometimes self-doubt. Knowing that this pattern shows up in research can help you feel less alone — and more validated.
From a Psychotherapy Perspective
As a therapist, I don’t provide medical treatment, but I walk alongside clients as they navigate the emotional and practical challenges of Lyme disease. Research like this highlights just how important that support can be:
Making sense of the journey: Processing the frustration of misdiagnoses and years without answers.
Living with limitations: Coping with fatigue, pain, or activity restrictions, and finding ways to still experience meaning and connection.
Rebuilding trust in yourself: Many clients tell me how invalidating it feels to be told “it’s all in your head.” Therapy can be a space where your story is honored.
Managing uncertainty: When symptoms wax and wane, it can help to develop tools for grounding, pacing, and reducing anxiety.
Strengthening support systems: Learning to ask for help, communicate your needs, and set boundaries with loved ones and providers.
You’re Not Alone
If you’ve felt like your Lyme journey doesn’t look like anyone else’s, you’re right — and research is starting to catch up to what patients have long known. Whether you’ve faced years of misdiagnosis, felt the weight of severe fatigue and pain, or struggled with the impact on your daily life, your experience is real and valid.