The Doctor Said DRESS Syndrome Was Rare — But I'm Living It

Why Medical Gaslighting Harms Patients With DRESS Syndrome and Beyond

They said it was unusual.

They said it didn't happen.

They said I was lying.

But I was living it.

And I'm not the only one.

When the Body Speaks — and No One Listens

Christina's reaction to modafinil starting as an arm rash

My reaction to the medication modafinil started as a rash. Not an itching one, but a burning one — like a sunburn hiding under my skin. I felt pain, acute pain, and I was medically dismissed. Even when the fever followed and nothing brought it down, the medical response was the same: minimal testing, patronizing words, and a conviction that I was just being hysterical.

Over the course of one weekend, I was taken to the emergency room four times. I was interviewed by a string of doctors. No one ever listened to me. Not until a dermatology resident in training finally looked at me was I finally diagnosed.

The diagnosis?

DRESS Syndrome — a rare and possibly fatal drug reaction.

Disregarded by the System, Again and Again

Rash spreading across her arm and chest

I'm a nurse. I explained my experience to them. I explained that I knew what my body was like and that something was seriously off. Still, they wouldn't listen. It was the peak of the COVID-19 pandemic, and if you weren't actually medical-coding (like code blue, meaning, "life-threatening medical emergency") or coughing, you were a low priority.

On my third ER visit, I left against medical advice, because I couldn't take the inhumanity anymore. That evening, I fell in my driveway. I gained consciousness when my fiancé was calling 911 — I told him not to bother. I told him I'd rather die on the couch with my dog, and I meant it.

In the end, I survived. But my body didn't.

I contracted a number of autoimmune diseases.

I lost my thyroid. I lost half the hair on my head and almost all the hair on my body. I now experience allergic reactions to nearly every new medication that I try. And I am told that I am only the 5th person known in the world to have this reaction to modafinil.

The Quiet Epidemic: Medical Gaslighting

What occurred to me is not an exception. It's a sign of something greater: medical gaslighting.

Her legs swollen, covered in rash during her hospital stay

Individuals with uncommon diseases live in medical limbo. They are informed they are "too sensitive," "anxious," or "making it up." Their pain is dismissed. Their symptoms are attributed to stress. They are characterized as being difficult, noncompliant, or attention-seeking — particularly if their labs are normal or their vitals are stable.

This reaction is gaslighting. And it’s not always intentional — but it is always harmful.

I’ve heard countless stories of people with rare diseases who were denied care, mocked, or ignored until it was too late. They weren’t believed because their symptoms didn’t fit a standard textbook or because their history made them easy to write off.

This gaslighting is not because of bad intent. It is in tone, in body, in assumption, and in omission. It happens when the provider sighs before you've said one word. It happens when the nurse will not advocate or when the resident will not hear you because they've already made up their mind.

Medical gaslighting also happens to loved ones who are trying to help. When my fiancé was feeling scared and anxious, they treated him like he was being dramatic. When loved ones get dismissed, as well, it indicates how deep the bias cuts.

History Shouldn't Be a Barrier to Care

Swollen face and rash across her body, feeling very unwell

I’m in recovery for substance use disorder. And I've been truthful about my drug abuse history and my recovery with my medical teams. That honesty, which should be in the service of trust, was instead turned against me and made me feel shameful. I've seen it on the faces of those who thought they "knew" what was really going on in my life.

This shame — of addiction, mental illness, or even just feelings — is killing people.

When a patient comes into the emergency room, their past shouldn't determine whether they are listened to. It shouldn't determine whether they are taken seriously. But it does. Too often.

Patients with unusual illnesses, women, minorities, those with psychiatric conditions or substance abuse histories ... these are the patients more likely to be dismissed. And that dismissal is not innocent. It's fatal.

What Needs to Change

If we are to prevent more individuals from injuring — or killing — themselves due to medical gaslighting, we can do better.

These are three starting points for the medical community:

1. Believe patients the first time

When you receive a report that "something is wrong," pause and listen. Don't presume anything. Ask questions. Ask open-ended questions and avoid assumptions.

2. Teach future providers to look beyond the chart

Medical training must include implicit bias training, trauma-informed care, and listening skills — especially when dealing with rare conditions.

3. Create systems that value the lived experience

Work in partnership with patients and engaging them in case review, education panels, and advisory boards. Doing so ensures that human stories guide medical decisions.

To the doctors and nurses and future medical processionals: Please take rare diseases seriously. Take patients seriously.

Final Thoughts — And a Message to Patients

Christina today, post her DRESS event

To people with DRESS Syndrome who have been overlooked: I see you.

Your pain is real. Your symptoms are real. You do not have to fight to be heard as you fight to stay alive.

DRESS Syndrome is rare, yes. But the process of being disbelieved — that is more prevalent that we should tolerate.

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