How Hypermobility, EDS and Lyme Disease Connect
- Kelly Harris
- Nov 11
- 3 min read
Kelly Harris, 42
For 47 years I have lived with the chronic illness and pain that accompanies hEDS (hypermobile Ehlers-Danlos syndrome). Pain, inflammation, chronic fatigue and a range of co-occurring issues like mast cell reactions and POTS (postural Orthostatic Tachycardia Syndrome) have been around to a greater or lesser extent for most of my life and any new symptoms can easily be mistaken for a "flare up".
That’s exactly what I assumed when my body started acting up before my family holiday last summer to Canada.
How Hypermobility Masks Symptoms of Illness
The first sign that something was wrong was a severe migraine-like headache that hit just before we travelled. I couldn’t eat, couldn’t stay awake and spent most of the trip sleeping through what should have been a relaxing and fun break. My joints ached and I suffered very badly from fatigue. These weren't new symptoms for me, however.
When you live with conditions like hEDS, you tend to normalise pain. You think, “This is just how my body works.”
Lyme Disease presentation in chronically ill bodies
It wasn’t until I noticed several strange purple-pink blotches across my body a couple of weeks later that I realised something was different - these were not normal symptoms for me. I went to two pharmacists for advice, both times explaining my existing health conditions and how the fatigue and joint pain were all worsening but that they were otherwise familiar symptoms. Both times, I was reassured that nothing was wrong with me and was sent away.
But my gut told me something was off.
On the third attempt, I met a pharmacist who trusted her instincts. She decided I needed to see a doctor rather than just take a short antibiotic course. That decision, and her willingness to look past the algorithm, made all the difference. When I returned to the UK and got tested, results confirmed what I had suspected from the beginning: Lyme disease.
Why is it so hard to spot new illnesses in patients with connective tissue disorders?
What struck me most through this experience was how easy it is for serious infections to hide behind the noise of chronic conditions like hEDS. Because people with conditions like mine already live with joint pain, inflammation, fatigue and neurocognitive symptoms, red flags can be missed, or worse, dismissed.
Algorithms used to assess Lyme disease or similar infections don’t always account for those overlaps.
Living with hypermobile Ehlers-Danlos syndrome
The importance of self-advocacy for people with hEDS and chronic multi-system conditions
Research now suggests that people with connective tissue disorders may have greater susceptibility to infections, slower healing and lingering inflammation.
When our immune and structural systems are already under added strain, something like a tick-borne illness can easily spiral or go unnoticed, especially when clinicians or pharmacists rely on checklists instead of context.
Post-Treatment Lyme Syndrome in hEDS patients
I eventually received a formal diagnosis and began treatment, but even now I’m navigating post-treatment Lyme syndrome (pretty common in people with our connective tissue).
It’s tiring, frustrating and unpredictable, but also a reminder of why self-advocacy matters, especially for those of us with chronic, multi-systemic conditions. If I hadn’t kept pushing, I might never have got that third opinion.
A call for better diagnosis of overlapping syndromes
I hope global awareness and future surveys will shed more light on this link between connective tissue differences, immune vulnerability and how infections like Lyme present in chronically ill bodies. Because ultimately, we deserve to be seen, not as the “usual” case, but as people whose normal baseline is already anything but simple.
You can find more research on these conditions here: