30 Days of PH: Believe Me When I Say: It’s Not All in Your Head

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by BioNews Staff |

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A photo illustration for our
A two-photo collage; on the left a young woman with long, blond hair smiles in a selfie, wearing a pink T-shirt; on the right, the same woman lies in a hospital bed with an oxygen cannula and heart monitors.

Brittany Foster fought for answers about her declining health but was initially dismissed by doctors. (Photo courtesy of Brittany Foster)

Day 16 of 30

This is Brittany Foster‘s story:

“It’s all in your head.”

These words have haunted me for the last seven years after I was finally diagnosed with pulmonary hypertension. Seven years ago, despite the list of diagnoses typed out on my medical chart, which included congenital heart disease and a history of pulmonary hypertension associated with it, I was told that my symptoms of fatigue, syncope, breathlessness, and a rapid heart rate were all anxiety-related.

“It’s all in your head,” the doctor said.

At 23, I was given a prescription for Ativan (lorazepam) and sent home. I knew something was wrong, but I was led to believe otherwise.

About a year later, with the Ativan making my fatigue worse, a cardiovascular surgeon told me I needed urgent bypass surgery, and that the symptoms I had experienced for so long were a result of my heart and lungs working too hard to keep me alive. Pulmonary hypertension was again added to my list of medical conditions.

My diagnosis story unfortunately began with a common problem that many women face: medical gaslighting. This happens too often for rare disease patients like me, who have an invisible illness. To an outsider, I was the picture of health. On the inside, I was anything but healthy, as my oxygen was plummeting below 80% saturation with the slightest movement.

I have since learned to advocate for myself as if my life depended on it. The reality is, I advocate for myself because my life does depend on it. I have learned to present evidence-based facts and bring medical records to every emergency room visit. I’ve gathered typed documentation signed by my care team listing and briefly defining each diagnosis I have.

My pulmonary hypertension diagnosis wasn’t “in my head.” But what is in my head now is more medical knowledge about my rare disease than most doctors probably have read in their textbooks. What will remain in my head are the years of suffering I went through just to find a doctor who would listen.

For me, advocacy serves to remind everyone to keep pushing for answers, to keep fighting for life, and to know that you are so much more than empty words when someone tells you, “It’s all in your head.”

Pulmonary Hypertension News’ 30 Days of PH campaign will publish one story per day for PH Awareness Month in November. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofPH, or read the full series.

A Conversation With Rare Disease Advocates