Chronic Illness Life with Ehlers-Danlos Syndrome: Health Care Induced PTSD

Health Care Induced PTSD is an incidence those with chronic illness all too often encounter on the road to diagnosis and even after diagnosis is established.

Some health care providers jump straight to conclusions with damaging biased judgments against us before we even state the whole spectrum of issues.

We go through gas lighting and medical neglect when the routine battery of lab tests doesn’t show the problem.

[Image Description: photograph with a close up shot of a gas stove burning against a black background. Overlayed in white text is: Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome, Gaslighting is a form of manipulation that seeks to sow seeds of doubt in a targeted individual or members of a group, hoping to make targets question their own memory, perception, and sanity. Using persistent denial, misdirection, contradiction, and lying, it attempts to destabilize the target and delegitimize the target’s belief. Source Oxford Dictionary. At the bottom of the photo is a oval text box with black font: Health Care Induced PTSD]
Diagnoses like depression, anxiety and somatoform disorders threaten detraction from the true malfunction. This puts us in unsafe waters in the sea of healthcare providers one encounters when chronically ill.

My own experiences with gas lighting tactics from healthcare is extensive. After the Ehlers-Danlos Syndrome and POTS diagnoses became obvious, there was a gauntlet to endure in order to finally recieve my official diagnoses. Not to forget about the twenty-some years of trying to get help from the medical system. It actually baffled me at times because I did not understand what it was about me that made these practitioners question the validity of my claims.

I was a hard-worker when I was able to work. I took all the steps to get control of my lifestyle factors and then some. There were times I was in impeccable superficial health. Unfortunately, this seemed to work against me when my system suddenly seized up and through me into painful crisis. All too often I was treated improperly or even poorly because my local doctors did not know what was wrong with me but there egos were too big to just admit they no interest in trying to find out my underlying problem. I was labeled, demeaned at times, and as in effect I avoided the doctors as much as possible for longer than I should’ve in consideration to the issues now uncovered with the VEDS diagnosis.

After my sudden, acute kidney failure which was likely brought on by my undiagnosed POTS, I went to my doctor’s office for my follow-up. I still felt horrible and the medicine prescribed in the hospital gave me the worst headaches. I expressed to the practitioner how I was still not doing well at all and requested help in filing for short-term temporary disability until we could figure out what was going on and get me better, again.

The practitioner looked me dead in the face and said she would not “risk her license” to help me with the request. 

I was shocked. Never did I ever feel judged so wrongfully without rational reason as I did in that moment.

At this point, my medical history was packed full of numerous medical crisis and eventful hospitalizations except for the prior two years. During that time, I avoided health care all together after yet another three week hospital admission leaving more questions than answers. That admission changed how I express and deal with the daily, often constant stomach pain so to the point I choose pain untreated rather than be accused factitious for my pain poorly managed.

I made diet changes and took on dedicated Yoga/Meditation practice. I hit the wellness forums online hard for suggestions in managing all my whack-a-mole symptomsThis made no difference to the practitioner as if I’d been a “problem patient” all along.

I could barely stand without the severe pain in my head from the medicine. I was 34-years-old going into kidney failure for no good known reason. Suddenly, all my gastrointestinal issues returned, my face was broken out in some kind of Lupus-like rash and I felt awful. Everything hurt inside and out. The medication prescribed on discharge was to help my chest pain but it was impossible to do anything around the headaches! This was after being functionable by all appearance beforehand. I just woke up one day with palpitations and shortness of breath that turned into severe chest pain and carpopedal spasms by the time I finished work! I wasn’t trying to slide a sly one past this judgemental practitioner. I just needed help.

My cardiology follow up showed “unusual orthostatic issues and tachycardia” with the recommendation for my primary to order a rheumatological consult. She blew this recommendation off with a flippant “We are not sending you to rheumatology with a negative ANA.”  Even though all this information was present and correlated with documentation, I was treated as though I were drug seeking party-sized prescriptions of narcotics for recreational use rather than answers for my unusual health crises.

My shock led me replying to this brash retort with “I understand why you would feel that way.” I hung my head as if I did wrong and should show shame. I don’t even remember the rest of the appointment. I left choking in tears as I slowly processed what just happened. Once I got home, I proverbially kicked myself multiple times for not putting this awful practitioner in their place. It was here when I gave up on the medical system and treated myself. I was jaded.

I quit the medication and never went back to that practitioner’s office. I managed okay with peaks and troughs over the next three years until an injury set off the most debilitating decline as yet in my years of illness.

The decline led to my diagnosis, so for that I am grateful but there is no excuse for the traumas inflicted upon my psyche by the medical system, a system I was employed in, just because my practitioners were not knowledgeable enough to see the whole picture. I went on with life slowly working my way back up to a fairly functionable level until my insidious EDS struck again. This time, I haven’t returned to any level of previous functioning and should not expect to as these things started breaking down long ago.

Progressively debilitating chronic disease is nearly impossible to reverse once the damage is done. I feel anger when my mind drifts back to this example of trauma. The darker side of me wishes this practitioner would one day experience the pain of being regarded as feigning when being sincere and in need of help. I don’t really want for this but the thought comes up nonetheless.

The experience shook me into an obstinate state of denial. From that time until my injury certain red flags in my health shot off but I ignored it telling myself all the pain and other more distressing symptoms were a figment of my overactive imagination. This dangerous delusion led to my thinking it would be okay to go back to floor nursing after getting out of that game four years prior due to shoulder injuries from patient care. Interestingly, it took a work injury I could not recover from for doctor’s to final recognize there was something more global at work in my cases beyond all my flares of “idiopathic” illness.

This is one small, short story to stand out as an example of the multiple instances of negligent medical care I endured throughout the years and at times even unto now. This story is mine but this stagnant behavior on behalf of the medical community is not uncommon in the countless stories found across the chronic illness blogs of the world.

For instance, a talented Canadian singer/songwriter, chronic illness awareness blogger and fellow Zebra, Rosie Guedes shares her story of gaslighting in the mental health care received and how it still affects her ability to gain access to medical care despite a world renowned physician’s diagnosis of Ehlers-Danlos Syndrome and Autism.

I’ve followed Rosie’s story for a couple years now when I began investigating the similarities between myself and what is now called Autism Spectrum Disorder. Rosie’s awareness videos and (affiliate link, see disclosures) her books (click to view and/or purchase) were a huge help in validating my experiences as a person under the radar but on the spectrum. It was only by chance she was a Zebra as well but good luck! I enjoy Rosie’s artistic works and activism efforts through sharing her journey, showing bravery in speaking out against the barriers to care she experiences.

Because of the difficulties getting appropriate care, Rose is at times afraid to use the emergency room for fear of being misunderstood despite dangerous symptoms and a declining condition. Her body is in failure mode and no one has any answers except pointing at the anxiety created by health care induced trauma. Family and friends are helping her promote a crowdfunded a trip to the USA to seek a more competent care. She has two children and a hubs who love and need dearly. The whole family is scared for Rosie’s wellbeing because of lack of EDS and POTS awareness.

Please consider giving to her GoFundMe for this effort and/or completing The Lemon Challenge for Ehlers-Danlos Syndrome Awareness. I will be doing the Lemon Challenge just as soon as I get my hands on a lemon!

Health Care Induced PTSD creates barriers to care, lined with sharp knives to cut those who need help the most but do not have the strength to withstand the pain, panic and isolation caused by practitioners who haphazardly wield a biased battleaxe of non-specific diagnoses instead of completing due diligence to help suffering patients.

If you are suffering because of Health Care Induced PTSD, you are not alone. Unfortunately, this is more common than not but if we all band together and keep sharing our stories eventually we will bust through the ignorant paradigms! I’d love to learn about other people’s experiences with this dangerous, negligent practice so please comment below or email me at to speak privately. Please subscribe here to get updates to this blog delivered straight to your inbox!

Stay strong my friends ❤

[Image Description photograph of a person with long hair sitting on a grass area overlooking a landscape of water. The sun is shining brightly on the right of the photo. The person is wearing a cream-colored oversized sweater and has longer dark straight hair blowing in the wind. The person’s back is to the camera angle. In black tet overlay is the (affiliate link to book; see disclosures for more info) Susan Pease Banitt Quote, “PTSD is a whole-body tragedy, an integral human event of enormous proportions with massive repercussions.” At the bottom of the photo in a cream-colored text box in black font is: Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome]

One thought on “Chronic Illness Life with Ehlers-Danlos Syndrome: Health Care Induced PTSD

Interact With Me!

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s