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My husband came down with what we thought was a simple cold about four weeks ago. Three weeks ago, I caught it from him—but my experience was much worse than his. 

After I lost my sense of taste, my daughter suggested I take an at-home COVID test. It came back negative for COVID, flu A, and flu B.

What followed was anything but a “normal” cold.

My symptoms included a terrible cough—so severe that I had to wear a pad because I couldn’t cough without experiencing bladder leakage. (The usual leg-crossing trick I use when sneezing didn’t stand a chance against this cough.)

I had coughing fits that lasted several minutes. They left me unable to talk, struggling to breathe, and, understandably, frightening my family. One episode was so intense that it made me vomit. I began avoiding talking altogether because it would trigger another round of coughing.

I also felt what I can only describe as a rattling or fluttering sensation in my chest when I breathed. It didn’t feel like it was in my lungs—it felt higher up, in my trachea or windpipe.

Eventually, I went to an urgent care center. The doctor listened to my lungs and said they were clear. She prescribed benzonatate for the cough. I explained that I could feel phlegm in my chest and that strange fluttering sensation when I breathed. I also told her I was coughing up mucus and clearing a significant amount from my sinuses each time I used my neti pot—which I was doing two to three times a day.

Despite all of this, she told me it was “just a cold,” and advised me to come back if things got worse.

I went home and continued to cough—relentlessly. I couldn’t sleep because the coughing never stopped for more than a few minutes. I ended up propping myself up with multiple pillows, essentially sitting upright in bed just to get some rest.

After several more days, I tried a telehealth appointment through my insurance company. They told me I needed to be seen in person again so someone could listen to my lungs.

A few days later, I saw my primary care doctor. He is familiar with my Ehlers-Danlos Syndrome (EDS) and dysautonomia, and knows that I don’t always respond to treatments in typical ways. I described the rumbling and fluttering feeling in my windpipe, but again, he couldn’t hear anything abnormal. Like the others, the focus remained on my lungs—which were clear.

He prescribed a different inhaler than I’d used in the past, along with a methylprednisolone steroid pack. Unfortunately, neither made a meaningful difference.

Desperate for sleep, I remembered that I had some Tylenol with codeine stored at home from a past surgery. I had barely used it before, but I decided to try one dose to see if it would help me rest.

It worked.

For the first time in over a week, I got a decent night’s sleep. I took it again the next night, with the same result. Not only did it help me sleep—it also significantly reduced my cough.

That led me to look up codeine. I was surprised to learn that it’s a cough suppressant. No one had offered it to me, despite the severity of my symptoms.

That discovery prompted another question: could Ehlers-Danlos Syndrome make a simple cold and cough significantly worse?

The answer appears to be yes.

Loose connective tissue, a hallmark of EDS, is believed to contribute to airway instability. This can create that fluttering sensation and trigger persistent coughing fits. None of the doctors I saw mentioned this possibility.

Looking back, I’ve experienced similar coughing fits and that same fluttering sensation twice before—once during a severe allergic reaction to new flooring in my home, and once due to mold exposure from a Christmas tree.

Now, three weeks into this illness, I’m still dealing with a persistent cough. It’s strong enough that I’ve pulled a muscle in my side (another EDS-related issue), and it worsens significantly when I lie down.

The only thing that consistently helps is Tylenol with codeine—but it comes with a downside: headaches. To manage this, I’ve started taking only half a pill, and as infrequently as possible.

I’ve tried a wide range of other medications—antihistamines (Benadryl and Chlor-Trimeton), Mucinex, cough suppressants (benzonatate and dextromethorphan), and Sudafed—but none have made a meaningful impact.

I’m sharing this because it was incredibly frustrating to seek medical care, know something wasn’t right, and repeatedly be told, “It’s just a cold.”

For those of us with Ehlers-Danlos Syndrome, a “simple cold” can become something much more severe and disruptive.

If you live with Ehlers-Danlos Syndrome—or any chronic condition—don’t ignore what your body is telling you. Keep advocating for yourself. Ask questions. Share specific symptoms, even the ones that seem hard to explain. And if you feel dismissed, it’s okay to seek another opinion.

You know your body better than anyone else. Your experience is valid—and it deserves to be heard, understood, and treated with care.

“I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation... I can do all this through him who gives me strength."