Hi friends. This is the first time I will be speaking openly on my personal experience with medical post-traumatic stress disorder. For most of my life, I have worked very hard at distracting myself when the vignettes of traumatic memories have flickered in my mind. I know that, with any trauma, more than one person can be wounded, so I especially want to be sensitive to my mother's feelings, and her lived experience during this painful time. This is difficult. However, I know by sharing my experience someone reading this may, for the first time, feel validated in theirs.
So here it goes.
I prefer not to talk in great detail about what happened or how it could have happened, but...
I remember the feeling of my heart racing every time he walked into my hospital room.
I remember the pain and fear I felt when he grabbed my wrist and yanked the phone out of my hand while I was having a conversation with my grandmother.
I remember his shaming words, “You’re faking. This is all in your head.”
I remember him forcing me to crawl to the communal shower on the children’s floor of UCLA Medical Center because he had taken away my wheelchair.
I remember I wanted to die, because he had made my life hell on earth.
Who did this to me? Who was the man who inflicted such torment on a then 13 year old girl? One might guess a deranged criminal, abusive boyfriend, or family acquaintance?
No...a medical doctor.
A medical doctor. A man in a white coat with “MD” stitched after his name. A name I will never repeat, because just producing the sound of it in my mouth makes me nauseous. A man with power, with prestige, and with a purpose to set out to make me his research project. He captured me and enrolled me (against my will) in his quest to further his controversial behavioral studies. The same studies that would later cause him to lose his medical license, and face charges in a court of law for his unethical practices. His acts were so egregious, that an entire “Dateline Special” was dedicated to exposing them and allowing his multiple victims a platform to tell their haunting stories on prime-time television.
A medical doctor who took an oath not to harm me…and did.
The trauma I experienced at 13 years old, as a child, would follow me in interesting ways throughout my lupus journey. For example, I found it unnerving to step into a teaching hospital (I still do). Moreover, I found it difficult to trust white male doctors after the trauma. In fact, the only time I felt comfortable with a male doctor is if I had a pre-existing relationship with him before my time at UCLA. This trauma also planted deep seeds of self-doubt, indignity, and degradation. I distinctly remember when my new rheumatologist sat me down and talked about my lupus diagnosis and my lab results and what they meant, and I thought, “This person believes that I am physically ill? That I need to be treated humanely? That I deserve a chance to live and thrive?” I felt shocked that a doctor cared, after my prior horrific experience. Due to the trauma my abuser inflicted, I still question my worthiness at times to be treated at legitimate hospitals, to see compassionate doctors, and to be given appropriate and necessary lupus treatments.
A medical doctor, at a prestigious medical hospital...caused these traumatic feelings of shame, inadequacy, and unworthiness.
Have you ever experienced a traumatic medical event or been traumatized by a medical professional or experience? If you have, you are not alone. Maybe you are reading this and you are feeling the little hairs stand on the back of your neck because you never considered yourself a “victim” of trauma. Maybe you have accepted the idea that whatever happened to you, was either your fault or something so shameful or so scary that you should not talk about it. Best to move on. Get over it. Forget about it. You wonder why you become anxious at times, why wearing a hospital gown makes your palms sweat, or why certain sights, smells, or sounds induce feelings of worry, anxiety, or panic.
Medical PTSD is a type of post-traumatic stress disorder that develops as a result of a medical diagnosis, procedure, or error. Medical post traumatic stress disorder is different from the more commonly known PTSD that is usually brought on by an external trauma such as an assault, natural disaster, or stress-inducing event. Though less familiar, medically induced PTSD is much more common than people think.
In a 2017 study by Clinical Psychiatry News, they estimated that PTSD occurs in 25% of people who experience a potentially life-threatening medical event. What this means is, statistically, if you have four people in a room who live with a life-threatening illness like lupus, at least one of the four has experienced or continues to experience medical PTSD. That’s striking that something relatively common is rarely talked about.
So, let’s talk about it.
Now medical PTSD doesn’t have to be from an external trigger, like my experience at 13. It could be a combination of factors, or as Dr. Edmondson states in the study above, medical-illness related PTSD is more of a somatic source, the trauma tends to be chronic, and the thoughts are often future oriented. As she stated, “It’s not uncommon that I’ll hear my patients with medical-illness induced PTSD say, ‘I’m really scared my disease is going to get worse.’” So feelings are aroused by internal triggers, fear of the future, the anxiety of living with an unpredictable, uncontrollable variable like lupus in your life.
If you are reading this and nodding your head because you recognize these thoughts, then you are in the right place. Maybe it was not lupus, but a birth experience, a long stay at the ICU, or a medical professional (like me) that caused your medical PTSD. Whatever the case, it is important to acknowledge it, and to take the lid off the dusty box in the attic where you have stored away your feelings.
So how do you process and (hopefully) work through your medical PTSD? Since I am not a medical professional, I cannot tell you what will work best for you and your unique experience. But, I do want to provide you with a starting point, a guide, to some of the most commonly used techniques that are used to help people process and heal medical PTSD.
DIAGNOSIS & TREATMENT
Below is a list of traumatic stress reactions that could signify that you are living with some level of medical PTSD. There is no shame in needing extra help with coping after a trauma. In fact, getting help is a healthy and proactive move to living your best life.
Thinking a lot (unwanted, intrusive thoughts) about the illness, injury, or procedure
Feeling distressed at thoughts or reminders of it
Having nightmares and “flashbacks” or what I call “vignettes” or pictures of a memory
Avoiding thinking or talking about the illness, injury, hospital, or things associated with it
Displaying less interest in usual activities
Feeling emotionally numb or detached from others
Trouble concentrating or sleeping
Exaggerated startle response
“Hyper-vigilance”— always expecting danger
New fears related to the medical event
New somatic complaints (bellyaches, headaches) not explained by the medical condition
Feeling in a daze or “spacey"
If you are experiencing some or many of the above sensations, a medical professional may offer some therapeutic suggestions. Some of them may include:
Counseling: In order to heal it …you need to feel it. Or at very least, acknowledge that what happened was not your fault, and though you have been changed by the experience, you don’t have to be a slave to your feelings about it. A professional mental health provider can help you talk through your experience.
Cognitive Therapy: This type of talk therapy helps you recognize the ways of thinking (cognitive patterns) that are keeping you stuck — for example, negative beliefs about yourself and the risk of traumatic things happening again. For PTSD, cognitive therapy often is used along with exposure therapy.
Exposure Therapy: This behavioral therapy helps you safely face both situations and memories that you find frightening so that you can learn to cope with them effectively. Exposure therapy can be particularly helpful for flashbacks and nightmares. One approach uses virtual reality programs that allow you to re-enter the setting in which you experienced trauma.
Eye Movement Desensitization and Reprocessing (EMDR): EMDR combines exposure therapy with a series of guided eye movements that help you process traumatic memories and change how you react to them.
Support Groups: Ask your mental health professional for help finding a support group or look for local support groups in an online directory.
Self-Care: Get adequate sleep, eat a well-balanced diet, incorporate daily exercise, and take time to relax. Try to reduce or avoid caffeine and nicotine, which can worsen anxiety. Don't self-medicate. Turning to alcohol or drugs to numb your feelings isn't healthy, even though it may be a tempting way to cope. It can lead to more problems down the road, interfere with effective treatments and prevent real healing.
Remind yourself that dealing with these feelings and processing your trauma can take time. Show yourself grace. Learn about medical PTSD and what you are feeling. And most importantly, remember you are not alone.
Thank you for allowing me a safe space to share a glimpse of my personal experience with medical PTSD. I hope this blog will allow you to feel safe to share your experience as well.
If you have experienced medical PTSD and would like to share your story with us, please reach out to us. Email me directly at email@example.com
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2020.