MEDICAL PTSD / MEDICAL TRAUMA
Updated: Oct 16
I hold no shame in admitting I have Medical PTSD. Three practitioners diagnosed me with it. Many things caused it for me, many things trigger me, and I am constantly seeking ways to help myself in this area. Almost anything medical, for me or a loved one, triggers me. It isn't just my own health that does it. I have used different things through the years. I would say EMDR and Somatic therapy are my favorites.
I admit to avoiding triggers as one way I have coped. Which has been borderline impossible many times. I am actively working on this still. I can now confront doctor appointments with more peace. But that is one tiny part for me. I am still learning how to stand up for what I need and how to communicate to loved ones so they can support me with this. Dismissing me or my reactions actually makes me angry. Being told to CALM DOWN in any fashion upsets me. I desperately wish for understanding.
I recently had my PTSD triggered when I was trying to get medical help for a different issue. It felt like I was reliving the nightmare of years ago, when I was searching for answers and a diagnosis for Lyme and coinfections.
Weekly sessions are slowly helping me find solutions. I embrace the progress I have made so far.
Short on time or energy? A quick-view graphic with the key points is at the bottom of this post.
IN THIS POST
-What others are saying
-The newest research
-What medical trauma can look like
-What can help
WHAT OTHERS ARE SAYING
"Gaslighting of Lyme patients is a big cause of medical trauma. Plus, there are studies on how trusting doctor-patient relationships actually benefit outcomes, so people with Lyme are often robbed of that opportunity." Kerry Heckman, LICSW, Lyme literate therapist
"Most patients with chronic illness who have been repeatedly misdiagnosed, and virtually unheard, wind up with some form of PTSD and adrenal exhaustion." Dr. Susan Marra
"Some patients develop PTSD due to the trauma associated with having an infection." Dr. Todd Maderis, LymeDisease.org
Jennifer Crystal shared with Global Lyme Alliance that years of delayed diagnosis, being dismissed by doctors, money stress and strained relationships can all be traumatizing. She reminds us that PTSD is a common and understandable reaction for Lyme patients, not a sign that you are "crazy."
THE NEWEST RESEARCH
-2024: A study in Healthcare led by Lamar University researchers surveyed 986 people with Lyme from 28 countries. About 7 in 10 were told chronic Lyme does not exist. People saw a median of 10 doctors before being diagnosed, and even with a positive blood test, most doctors were still not convinced. The authors pointed to earlier research showing that medical gaslighting can lead to anxiety, depression and PTSD symptoms.
-2024: A Pace University dissertation study of 231 adults with chronic Lyme found high levels of PTSD symptoms. The more uncertainty people felt about their illness, the more PTSD symptoms they tended to have.
-2022: Dr. Todd Maderis wrote for LymeDisease.org that chronic infections like Lyme and Bartonella can cause brain inflammation, and trauma and PTSD can keep the body's stress response switched on. He shared Dr. Robert Bransfield's approach of a full assessment to find the biggest contributors and treat them in the right order.
-2022: Global Lyme Alliance shared red flags of medical gaslighting, like a provider who interrupts, downplays your symptoms, won't discuss them, skips important tests or blames your symptoms on mental illness without a referral. Their message: your symptoms are real, and you deserve to be believed.
WHAT MEDICAL TRAUMA CAN LOOK LIKE
-Feeling triggered by doctor's offices, bright lights, being touched or the smell of disinfectant
-Panic attacks, feeling numb or detached, and trouble sleeping
-Trauma from being ignored while in pain, not having a procedure explained, or having your wishes brushed aside
-It can happen even when no one meant any harm, and it is real if it felt traumatic to you.
WHAT CAN HELP
-Therapy options like EMDR, somatic therapy and trauma-focused CBT
-Bringing a trusted advocate with you to appointments
-Writing a medical timeline and medication list before visits
-Changing providers if you are not being heard
-Gentle support from loved ones who listen instead of telling you to calm down
If you ever have thoughts of hurting yourself, please call or text 988 right away.
RELATED RISE ABOVE LYME POSTS
THERAPY OPTIONS AND INFORMATION
RISE ABOVE LYME LITERATE / KNOWLEDGEABLE THERAPISTS (and some Psychiatrists now)
MENTAL HEALTH
DEPRESSION AND ANXIETY
COMPASSION OVER TOUGH LOVE FOR CAREGIVERS
CAREGIVERS
SOURCES
Healthcare, Medical Gaslighting and Lyme Disease: The Patient Experience (2024)
Pace University, Uncertainty in Illness and PTSD Symptoms in Adults with Chronic Lyme Disease (2024)
Global Lyme Alliance, Medical Gaslighting and Lyme Disease (2022)
Global Lyme Alliance, Jennifer Crystal, Lyme and Post-Traumatic Stress Disorder (2022)
LymeDisease.org, Dr. Todd Maderis, Adverse Childhood Events, PTSD, and Brain Inflammation (2022)
Psych Central, Medical Trauma Exists, and It's More Common Than You Might Think (2021)
Kerry Heckman, LICSW, Lyme Literate Therapist, interview (2021)
Dr. Susan Marra, PTSD and Lyme Disease
Disclaimer: Rise Above Lyme makes no claims about any possible benefit of using any product mentioned within this site. Always consult with your doctor before adding anything. The information shared is based on personal experience, years of accumulated researched resources from Lyme Literate doctors and polls conducted within Lyme groups from actual patient experience using these solution ideas.
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