Diagnosis with a Side of PTSD

The howling of my baby boy in a heap on the floor is what finally did it.

I’d just dropped my son. The occasional tingling in my hands was suddenly complete numbness and loss of control. This was not my first bizarre symptom. I’d “learned to live” with the others, per my doctor’s “advice.” The unending pain that drifted, manifesting in different places at different times was attributed to untreated scoliosis (thanks, childhood poverty!) and hypermobility. New motherhood and marriage, a grueling, 20-unit senior year of college, and an impending thesis defense explained the fatigue and hypersomnia. Everything else — per my doctor — was deemed too sporadic to be investigated or examined.

But this? Dropping my son? Something was very wrong, and I needed help. So, I made an appointment with my general practitioner. What I never imagined was the hell the next four years would turn into, and how my relationship with the medical community would cause damage I struggle with even now, decades later.

“Pain doesn’t move.”

“If you were in that much pain, you’d be unconscious.”

“You’re too young to be in that much pain / be that sick / have that many problems.”

“You can’t have pain AND numbness. It is one or the other.”

“All your blood work is fine. There’s nothing wrong with you.”

“It is all in your head. You need a psychiatrist, not a medical doctor.” (A two-for-one insult.)

“If you were that sick, you wouldn’t be wearing makeup / be showered/look like that.”

“Women just have a low pain tolerance. You need to buck up, sweetie.”

“You can’t be tired if you’re sleeping 10–12 hours a day.”

“Wait until you go through childbirth….THEN you’ll know what pain is.” (My son was two.)

“You don’t look sick.”

The way I looked determined so much of how I was treated at every level of the medical establishment. I was a young Hispanic woman that looked even younger, complaining of something they couldn’t test, measure, or quantify. I refused to be subjugated by my body, so I took the time (with help from my husband) to be presentable at my appointments. What I didn’t know is how that undermined me, made doctors think I was exaggerating because I looked fine. They had to believe me to treat me….and they didn’t believe me. In four years and dozens of appointments, no one looked holistically at what was happening. In the best cases, they would treat (usually with a pill) one symptom of the 20 and move on.

In the rare instances when I could get tests, their invasiveness and brutality were breathtaking (looking at you, nerve conduction tests). Weak, bruised, and weeping on the floors of hospital hallways, my medical providers walked past me without a glance. “Do no harm” apparently didn’t apply if they thought I was a liar, a drug seeker, and a hypochondriac. Multiple surgeries did nothing but exacerbate my symptoms and my fear of reporting yet another failure.

With each treatment failure, my pain and fatigue were further weaponized, their continued existence used as proof positive that I was exaggerating or malingering when I didn’t improve. I faced “Yentl Syndrome,” a common term in the medical community. From “The Girl Who Cries Pain” study, women are “more likely to be treated less aggressively in their initial encounters with the healthcare system until they ‘prove that they are as sick as male patients.’” Obviously unsuccessful at “proving” my pain, I was left with medical bills exceeding our mortgage, no diagnosis, and taking handfuls of medication while nursing physical and psychological scars I carry even today.

I went to Dr. Barbeau the first time for an introduction appointment and a recurring sinus infection. She started pressing my sinuses and asked the totally innocuous question — how was I. I started to sob…. and sweat….and shake…I barely missed vomiting on her shoes, and thankfully she laid me down before I fell over.

I knew too well what a huge mistake this was. Displaying any emotion made me less credible in the eyes of the medical community, guaranteeing I’d get no help OR I’d be given another sedative to add to my collection. I waited for her to call me some version of hysterical and send me off with yet another pill and no answers. Instead, what I got was totally unexpected.

“We’ve really put you through the wringer, haven’t we?”

Dr. Barbeau read through my chart. She’d seen all the appointments, symptoms, the tests, and surgeries — my own medical road to nowhere. In my reaction, she saw the toll the last four years of searching for a diagnosis had taken on me. As far as I was concerned, I wasn’t safe at the doctor’s office, and everything in my reaction told her that without a single word.

My road back began that day with Dr. Barbeau. She recognized the PTSD years of agonizing interactions with the medical community and a near-crippling mystery illness triggered. She listened to the full accounting of what I experienced each day and then used that information to diagnose multiple, overlapping chronic conditions. She was realistic but kind, and always collaborative; there was no cure, and our treatment options were limited due to the lack of research and funding there was (and still is) for my diagnosis. But together, we patiently worked through the different treatment combinations until we found what worked. My “before life” — who I was, what I could do, and how I lived — was gone, but she helped me find a new normal.

It was progress.

 I still struggle — two decades later — to rein in the anxiety that precedes every doctor’s appointment. I still assume I will not be heard, believed, or helped, but I know I can leave that provider’s office without a moment’s hesitation when that happens. Changing doctors or seeing new ones still causes palpitations and sweating, but at least I can walk in without shaking uncontrollably. Sometimes, progress is enough.

None of this had to happen. Had any of the medical practitioners before Dr. Barbeau done exactly what she’d done — read my chart, reviewed all the previous treatment notes, listened with empathy and trust when we spoke, conducted a full and complete diagnostic evaluation of my physical condition — my outcomes could have been different. We live in a world of what is — not what should be — and how I looked, where I came from, and the money I didn’t have mattered more….more than the pain and fatigue, more than the tests, more than the treatment failures. Pain and illness aren’t bound by race, age, class, and gender, and medical diagnosis and treatment must not be either. Working past our bias is hard, daily work, but patients deserve this and nothing less. Our lives depend upon it.