What It's Like to See a New Doctor When You Have Medical PTSD

I’m sitting in one of those uncomfortable plastic chairs, the ones most doctors’ waiting rooms have. It’s been 45 minutes since I was scheduled to go in for my appointment. The woman next to me has clambered up to the reception desk three times, asking why it’s taking so long for her to see the doctor. I haven’t bothered asking the question myself. These things take the time they take. Harassing the receptionist isn’t going to get anyone seen any quicker. I’ve had nine years’ experience in this waiting room game, so I feel I’m qualified to make this statement.

• What is PTSD?

Forty-five minutes. It’s been enough time for my palms to get sweaty. Enough time for my thoughts to race uncontrollably. Enough time for flashbacks to surface in my mind. These flashbacks make my heart pound and my breathing accelerates. Nausea hits. I tell myself to be calm. I remind myself that bad things don’t happen at every appointment. I plan what I will say to the doctor when he opens the door. I repeat these words in my head. I practice deep breathing and read the posters on the wall about diabetes management and the flu vaccine. My mind keeps throwing scenarios at me. I remember the time a doctor watched me get undressed. I feel like I need to vomit all of a sudden.

The door opens. The doctor hurriedly comes out to the waiting room and calls my name, scanning the room for the body that emerges from the plastic chair. I’m shaking now. I try to hide it and attempt to walk into the office in a calm and composed manner.

“So what’s the reason for this visit?” the doctor asks.

I take a deep breath and start talking. The doctor’s eyebrows furrow and his face falls. I know the look. I’ve seen it so many times before. It’s that look they get when they know it’s not going to be an easy appointment — when it’s not as simple as antibiotics for a UTI or eye drops for conjunctivitis. The doctor asks me to write down the medical condition I have because he doesn’t know how to spell it.

Doing the best I can to still my shaking hand, I write the words “Ehlers-Danlos syndrome.” Silence occupies the room as the doctor looks up my medical condition. He then asks me about my joint pain. I reply that I am one of the lucky ones, that my joints don’t dislocate too often, but I have the myriad of comorbidities that come from having this connective tissue disorder. He does the right thing and takes my blood pressure. He asks me if my blood pressure is always so low. I say yes. He asks me if my heart rate is always this high. I say yes. I have to keep my answers short, because if I start babbling the appointment will turn sour. If I mention too many details at once, he’ll likely think I’m a hypochondriac. I’ve had nine years’ experience in attending new appointments, so I feel I’m qualified to make this statement.

He asks me to get up on the bed so he can assess my stomach further. It’s the latest source of my pain. I’ve been ignoring it for three months, hoping it will go away, but it hasn’t abated. The plastic pillow-topper crunches under the weight of my head as I lay down. A flashback hits me again. I’m whisked back to the time when the gynecologist continued the painful examination, even after I asked her to stop because she was hurting me. I look up at the roof and try to count the flowers on the light fixture. Twelve, from what I can see from my vantage point on the bed.

The doctor comes to the bedside. I lift up my top. He listens to my stomach with his stethoscope, moving it around. Auscultating; he’s listening to my bowel sounds. Over these nine years, I’ve become quite well versed in medical terminology. Out of nowhere, my mind pulls up that time a doctor scratched at a rash I had on my back, in need of a skin sample, and left me raw and bleeding. I count the flowers on the light fixture again. I have to remember to breathe. I’m suddenly taken back to when the physiotherapist pushed on my hip too hard and I felt a clunk, which resulted in yet more pain and a month off work. Sweat patches soak my underarms.

It’s always the worst when I’m lying on the bed.

The doctor presses down on my stomach, making me wince. He’s unsure as to what’s causing the pain and declares that some basic blood tests are needed. I pull down my top and exhale in relief. No one has hurt me today. No one has told me I’m imagining things today. I can still hear them, their voices echoing in my head each time I have to consult a new doctor or specialist:

“You’re too young to have so many health problems.”

“I’ve seen this before with young women, it’s all in your head.”

“You’re probably just depressed or anxious.”

“You’re just going to have to learn to live with it.”

I get up off the bed, remembering all those times I cried in the car on the way home from appointments, thinking I was losing my mind. It’s very psychologically damaging to be told you’re imagining your pain. At various points, I thought I was going mad. Eventually, with the help of a very good GP who has since retired, I received answers. Still, this bonafide diagnosis has not erased all those years of comments from my mind. I still see the surgeon who pointed to his temple and said “It’s all in your head. It’s not real.” That surgeon has psychologically scarred me way more than the high school bullies ever did. The taste of blood makes me realize I’ve been biting the side of my mouth.

The doctor sits at his desk and begins typing thoughtfully. I think I may be able to come back to this doctor in the future. This is a relief. I then sit back down on the chair, reminding myself that I thought this about quite a few other doctors in the past. I remember that after appointment three or four, the doctor often becomes a little agitated and refers me to a specialist of some kind, where I will wait six to 12 months for the appointment and then I will leave said appointment without a treatment plan or answers. I’ve had nine years’ experience in this specialist-handballing act, so I feel I’m qualified to make this statement.

The doctor hands me the slip for a blood test and shows me to the door. I feel as though I can breathe properly for the first time since entering the clinic. No one else has to touch me today. His face pops into my head — the medical student who, when I was about to be put under anesthesia for a bladder operation, asked if he could do my vaginal exam to gain experience and tick off the task in his practical skills book. I’d had no idea that I was even having a vaginal exam since no one had communicated this to me. To this day, I do not know if he got to put that tick in his book, because before I could say no, the anesthetist put me under.

My name is Kelly, and on top of a long list of diagnoses, I now also have post-traumatic stress disorder. This stress response has been brought on after spending nine years trying to navigate the health care system with a rare disease few medical professionals have heard of or understand.

No, I am not a soldier. I have not fought in the military, though I have fought a battle of sorts. The battle to diagnosis took years. I was subjected to treatments and tests that have left me both physically and psychologically scarred.

I have been prescribed medication that has nearly killed me, twice.

I have longstanding symptoms caused by medications that I should not have been given.

I have had treatments that left me with permanent injuries.

I have been huffed at, belittled and flat-out insulted by the people who were supposed to help me.

I know I am very lucky to live in a country where I have access to health care. But all those times well-meaning doctors and medical professionals have tried to help but have ended up causing me more pain, they add up. The demoralizing appointments where doctors didn’t believe my symptoms, they add up. Procedures have gone wrong, leaving me scarred and suffering, and add up into what can only be described as a fear of health care professionals.

But I am so lucky to live in a country where I have access to health care. I’ve had nine years’ experience in this chronic illness thing, so I feel I’m qualified to make this statement.

I remind myself this as I leave the doctor’s office and head to reception to pay. My hands are still shaking as I pull out my card.

The receptionist asks me if I need another appointment.

“Yes,” I say. I will always need another appointment; I’m chronically ill. And then the fear hits me again, a hot flush through my body, because I don’t know what I’ll be walking into the next time I go through that door, lay on the bed and hear the words, “Now this should only hurt a little bit.”