A few weeks ago I was seen as a patient at an internationally-known medical center. I’d been referred there for a diagnosis for the lesion in my brain stem.
Seconds after he entered the door, my neurologist hit me with a gattling gun of questions: minute details of my medical history from fifteen years ago, when I’d first gotten sick with similar symptoms.
I’m so familiar with medical settings, terminology, and protocol, that most doctors ask me if I’m a physician’s assistant or nurse. But as the doctor repeated the same question over and over, I found myself crying.
I didn’t have answers. I couldn’t remember my medical history. What I did manage to communicate to him was that I had medically-related PTSD. I couldn’t remember the facts of my medical history because I (and close family members) had been in a dissociative state.
In 1999, I’d lost the ability to walk, see, stand. I was terrified for my life. I’d undergone MRIs, PET scans, and lumbar punctures, not to mention so many blood draws that all the available blood vessels in my body had exploded or gone bad. Doctors by the handful had consulted on my case and never offered a diagnosis for the “thing in my brain” stem. I’d set the vomiting record in the oncology unit of our state’s largest major medical center.
And no, none of my family members kept a medical journal.
So fifteen years later, when my symptoms recurred, my memory was a haze.
1. Keep a medical journal. Track your symptoms, when they began and how long they lasted. Include doctors’ names, where you were treated, and your means of treatment (including medications). Also note how you responded. Take it with you when you see a new doctor (keep it as concise and readable as possible.)
2. Let your doctor know you have medically-related trauma. Explain any specific fears (claustrophobia and fear of MRIs, fear of needles, etc.). Let the doctor know in writing (be concise) if any past medical procedures were unusual or complicated (for instance, anesthesia during my daughter’s C-section went too high and I had to be intubated).
3. Take a family member or medical advocate to your appointment. It’s always better to have a second set of ears to hear instructions and help you process information.
4. Look for a medical provider who understands trauma-informed care. Feel free to call their office and ask if staff is trained in trauma-informed care. If not, ask if the doctor would be willing to consider information about how trauma-informed care can positively influence patient satisfaction.
5. Carry 3 x 5 cards that explain your medical triggers. These cards should list your triggers and provide simple grounding techniques. (You can find them on this site or other sites, or we can send cards to you.)
One of the most important goals in health care is patient satisfaction. By keeping trauma-informed care in mind, health providers can enhance the patient experience. Here are a few recommendations:
1. Assume that every patient has medically-related trauma. This simple assumption should shift one’s perspective from “What happened to you/wrong with you?” to “What’s your story?” It creates an atmosphere for partnership.
2. Approach slowly and ask permission. Trauma victims fear giving up control of their bodies to medical personnel. Consider standing by the door or sitting on a stool and approaching patients slowly. Ask first before placing a stethoscope or instrument or your hands. Give reasonable accommodations whenever possible.
3. Ask patients to fill out detailed histories before coming into the office. This gives them the opportunity to recall details over time and to ask for help.
Have you experienced medical trauma? How have medical personnel helped you cope?