Medical trauma is a very real thing for those of us in the chronic illness community. Most of us will experience at least one instance of medical trauma and many of us will experience chronic trauma. I’m writing this blog entry in large part to help me cope with my own very recent medical trauma. It will likely be long, because in my therapy practice I specialize in trauma, and I’m very passionate about helping others manage symptoms and heal from trauma.
Before I dive right in, I’d like to discuss a few important things mainly for my readers with their own current or previous traumas. I will try to be sensitive and not share too many upsetting details, but if at any point while reading this you become triggered: please stop reading. I do not want to cause you more pain. For decades now I have helped my own clients process and begin healing from trauma – some of them with acute traumas from a single incident but many with recurring and complex trauma. And I suffer from my own Complex Post-traumatic stress disorder (C-PTSD). This is not presently an official diagnosable condition according to the current Diagnostic and Statistical Manual of Mental Disorders. However, based on my personal and lengthy professional trauma experience, it very much should be. Hopefully in future versions…
A trigger is anything that reminds you of a previous trauma. Triggers cause your body and mind to react as if the trauma is occurring in the present. This can sneak up on a person, so please pay careful attention to your thoughts and feelings as you are reading this blog or reading or watching anything else trauma-related – movies, TV shows, books, social media, etc. Trauma triggers are very real things. I recently started following a page on Instagram where sexual abuse and assault was being highlighted. This is a really important topic as many of us, particularly women, have experienced it. However, what I didn’t realize was that people were sharing their own personal stories on this page. While that can be really helpful in education, bringing a long-hidden issue into the spotlight, holding abusers accountable, and helping other victims recognize and feel validated in their own sexual traumas, for me it was a very triggering experience, and I had to stop following the page. I’m trying my best to keep that from happening on my own blog.
Another important concept to address is vicarious trauma. Vicarious trauma occurs when you take in details of someone else’s trauma, and you begin to experience the trauma as if it is happening to you. This can also sneak up on a person, so please be careful readers with your own thoughts and feelings while reading this post or any other medium highlighting trauma.
Ok. So enough with the medical jargon. Let’s begin. Medical trauma can occur in many settings – physician offices, pharmacies, hospitals, and even in psychotherapist offices. Sadly some of my colleagues fail to fully recognize the privilege of holding their clients’ thoughts, feelings, and stories. And some are not aware enough of their own traumas or thoughts and feelings which leads to countertransference. Ok I lied. Lol. Here’s another medical term – countertransference occurs when a therapist is unaware of their own thoughts and feelings and reacts to their client out of their own emotional issues. This can be especially damaging for clients seeking help with trauma. Psychotherapists are real people too. And we all have our own thoughts, experiences, and feelings that can be really beneficial in helping our clients. However, it’s also important that we are aware of ourselves enough to not allow them to negatively impact our clients. I’ve seen too many clients needing therapy mainly to process trauma from a previous therapist. If this describes you, I sincerely apologize on their behalf. These professionals are probably not able to acknowledge that you deserve their apology. But when you experience trauma from a professional from whom you are seeking trauma help, it can be especially damaging. I’m by no means perfect, but I work very hard not to cause more trauma for my already hurting clients.
For those of us with chronic illness simply finding the right specialist to diagnose and treat us can be a traumatic experience. Many wait decades to be properly diagnosed with psoriatic arthritis (PsA) and/or a myriad of other complicated diseases. Fortunately for me my diagnosis journey for PsA was relatively brief, but I still saw multiple specialists before miraculously landing in my current rheumatologist’s office. To this day he remains my very favorite physician. The medical world is complicated and very hard to navigate, especially for novice patients. We really have to be our own advocates. Not having a proper diagnosis is isolating. So, if you’re still searching for your person, please don’t give up. Taking a break is necessary sometimes, but after that break, please keep going. You are worth the effort.
If you have a complicated disease like PsA or many others, there can be diagnosis trauma (I made that term up). Even for me. Soon after starting with my first rheumatologist, he left the practice. Having later tracked him down in his current practice, I completely understand why he left. The two practices are not even comparable in terms of atmosphere, office set up, staff, attentiveness to patients, skill and experience levels of physicians, services offered, and really everything else. I’m surprised he even ever practiced at the first tiny little practice in my relatively small town. When he left though, especially having read other patients’ horror stories, it was really anxiety provoking for me. Rheumatologists (affectionately called rheumies) are not all equal.
And despite reassurances from my first rheumy that the transfer to another onee in the practice would be completely fine for me, my anxiety proved correct. This second physician spent almost every appointment questioning my diagnosis. I’ve since discovered that my case is particularly tricky, and I tend to get all the rare things. Lucky me. Sigh. To reframe it when my daughter was really into unicorns, I liked to think of myself as a rare precious unicorn. Now that she’s passed this stage and unicorns are apparently no longer cool enough, I currently refer to myself as a rare precious gem – think “Steven Universe”. I’ve got to stay cool and relevant. Lol.
This particular second rheumy seemed like a nice person and expressed some compassion, so I stayed with him for far too long. After every appointment I would spend the next several months until my next one ruminating over every last detail. He never seemed to remember important details about me or my symptoms, and I often wondered if he even reviewed my chart before appointments. Diagnosis is extremely important in the chronic illness world. It’s our gateway to proper treatments, understanding from significant others, and support from fellow warriors. This was medical trauma – unintentional I’m sure on the part of this rheumy, but trauma nonetheless. I’m so very thankful that I gave myself the gift of tracking down my initial rheumatologist. Fellow warriors – trust your instincts. If your physician is causing you needless anxiety, saying things contradictory to your experience, not remembering important details about you, etc. find another one who will give you the attention you need and deserve and one who has enough experience to competently manage your particular issues.
Pharmacies can also cause unnecessary anxiety for patients. Delayed shipments of specialty medications, not advocating for patients with insurance companies, billing errors, crucial out of stock medications, medication shortages, and so many other things. And I devoted a whole other post to the trauma of needing opioids for pain management. It’s especially frustrating when we’re forced to use a particular pharmacy and this same company also manages your prescription benefits – I’m talking about you, CVS. When this happens repeatedly for those of us in the chronic illness community it’s called medical trauma. So much of this is out of our control. The only advice I can give is to keep advocating for yourself and find physicians who will navigate the process with you.
Hospitals and ERs are also a major source of trauma for chronic illness warriors. They are often not set up to deal with the intricacies of rare or more complicated diseases. I’ve heard way too many horror stories from other patients. But I will only share the story of my one and only ER visit. I never want to visit an ER again. For some important history – I’ve suffered from gastrointestinal (GI) issues for most of my life. But as a helper, I have historically paid very little attention to my own body. This combined with my abnormally high pain tolerance kept me from pursuing proper medical attention. My few medical visits for these issues throughout the years left me with physicians telling me that my symptoms were stress related – likely because I underemphasized my symptoms and I have always had a lot of stress in my life. But in the fall of 2019, I experienced my first severe ulcerative colitis (UC) flare. Because I had no official diagnosis and was unaware of the significance of my GI issues to be able to inform my rheumy, I was taking a biologic with the rare side effect of causing UC flares. This biologic worked the very best for my PsA (and to date I’ve taken a lot of them thanks to my ridiculously overactive immune system), so it was devastating when it led to a life threatening UC flare. I think I’m still my rheumy’s only patient to have this experience. A rare precious gem indeed.
But… back to my ER visit. After a visit with my primary care physician (PCP), her staff diligently called a local GI specialist until finally they found an initial visit slot for me. However, in the meantime my symptoms became so severe that I couldn’t sit or lie down without excruciating pain. I barely left my bathroom. And the rest of my time at home was spent sleeping. I was too exhausted to do anything else. There were several nights where the entire night was spent on the toilet or rocking myself on my bathroom floor. The pain was unreal. Out of sheer desperation I decided to go to the ER. I was mainly hoping for some pain relief or relief from symptoms. At this point I really would have been happy lying in a hospital bed in an induced coma. It was that bad. I chose Johns Hopkins because I thought they would be best equipped to deal with wonky autoimmune issues.
When I arrived in the ER large signs were posted everywhere stating that pain meds were not given to chronic pain patients. At this point I had only ever taken NSAIDs for my pain. But because of my severely flaring GI issues I was no longer able to tolerate them. After checking in at the front desk, I waited over an hour to be seen in triage. Then when in triage after explaining my symptoms, a nurse set up an IV that was never used and gave me one ibuprofen (an NSAID). Ummm…. I was sent back to wait in a very uncomfortable (especially because my rectum was completely inflamed) waiting room chair for about 10 hours. Finally at 2ish AM, I was taken back to be seen by an ER physician. At this point a student was the main treating physician. He ordered zero imaging, gave me no pain relief, and attempted an excruciatingly painful rectal examination with his hands. He then informed me that he couldn’t see anything and stopped the exam because I was in too much pain and moving around too much. He and his supervising physician later came back into the room to inform me that there was nothing they could do to help me and that my best course of action was to wait for my GI specialist appointment. They sent me back out to the uncomfortable waiting room to wait for my husband to pick me up. He was of course at home with our kids. I’m not an easily rattled person, but that ER is REALLY scary at that time of night, especially for a tiny woman like me. I went home feeling even worse than before.
I got no relief until a few days later at my initial GI appointment when I was told to start on high doses of prednisone. A colonoscopy a couple of days later revealed severe ulceration throughout my entire colon and rectal area. The pictures from that exam look awful. I could have died if I waited any longer to be treated. And because I was in survival mode it took me many months before I realized how traumatic this ER visit was for me. For fellow chronic illness warriors that have also suffered ER trauma – your trauma is real. Significant others – please validate your loved ones’ trauma for them. I have since avoided going to an ER at all costs, which will lead into my next trauma story…
Medical trauma can also occur as a result of medications taken to treat diseases and their symptoms. Because of the trauma and stigma associated with using opioids for chronic pain, when my functional medicine physician discussed an alternative treatment that seemed hopeful, I was eager to try it. As a side note – the huge majority of chronic pain patients don’t medicate down to zero pain. We simply medicate to a functional level. For most of us this is still a very high pain level. Our tolerance level is unreal for most people. Back to this situation though – Finally my medication arrived in the mail from a very specialized compounding pharmacy. I was using this particular medication for an off label use, so it’s not covered by insurance or filled at most pharmacies. However, my physician and the head of her practice had shared many great success stories from other patients using this med for inflammation and pain relief.
So here I was 2 nights ago now injecting this liquid medication under my tongue with high hopes for its effectiveness. Then I crawled into bed willing the meds to start working their magic. Within an hour my whole body started moving uncontrollably. A little later my nasal passages began to close from inflammation making it hard to breathe. Then soon after my throat started closing too. This led to a panic attack because I could no longer take effective breaths. I must have been able to breath somewhat though because I’m still alive. Frequently throughout the night I was also in the bathroom for terrible GI issues. And my abdominal pain rivaled the previously discussed UC flare experience. Finally at about 5 AM my body must have settled down enough for me to get a few minutes of sleep until my son woke up and started making breakfast. I had moved out to our living room to keep my husband from waking up. I was so distraught, it didn’t even occur to me to wake him up for help. The next day he told me that I should have woken him up to take me to the ER. But because of my last horrendous experience, going to the ER didn’t even enter my mind as an option.
Because I’m a chronic illness warrior and used to functioning and maintaining a family and work schedule at pain and fatigue levels that would keep most people in bed all day, I tried to go about my day as normal. I barely made it through my physical therapy (PT) appointment, and my PT told me I should contact my physician. For some reason before this, it didn’t even occur to me as something I should do. When I got home I sent a message to my physician’s office through their patient portal. Fortunately they responded promptly and completely validated my experience. I say fortunately because sometimes when physicians haven’t experienced a situation with previous patients, they invalidate the patient’s experience and insist that the symptoms must have come from something else. My guess as a mental health expert is that they don’t want to feel responsible for their patients’ adverse reactions and are responding out of their own sense of inadequacy. That’s just an educated guess though. I tend to view most people as operating from their very best in any given situation. Which of course also does not excuse medical negligence. We all need to get out of our own way when helping other people.
My physician scheduled an emergency telehealth appointment for me within an hour. Not only was my physician present, but also the head of the practice and a student (for learning experience). Again, I’m a rare precious gem and I’m sure I provide lots of great learning experiences for medical professionals. After consulting with another physician outside of the practice, they informed me that not only have they never encountered a patient with this severe of a reaction, but this other physician hadn’t either. Together they determined that it was a very rare allergic reaction, and this medication was immediately placed on my NEVER take again list. I had already thrown it in my trash can and covered it up with more trash so I never had to see it again. They responded compassionately, expressed great empathy for me, and never questioned my experience. All the things that are needed to have a trusting relationship with a physician and their practice. And because of this a few days later now, I am finally able to acknowledge for myself the magnitude and significance of the trauma I experienced and to allow myself to rest (well a little at least – I drove an hour and am at my son’s regional winter track meet as I edit this post. I don’t recommend that. Lol.) and heal and express myself through this post.
I hope that all of my fellow warriors have physicians in their lives like this. We are literally entrusting out lives to these professionals. And knowing that we are seen, believed, respected and validated is crucial. If you are not experiencing this on a regular basis from a physician, please if at all possible find another one who will. You are worth that. I recognize though that I’m speaking from a position of privilege. Fortunately in Maryland, we have a plethora of competent physicians to choose from, especially rheumatologists. There is very little reason in my area to stick with one who isn’t adequately meeting your needs. Other areas are not so lucky. But, if at all possible, a great physician is worth the time and effort of traveling longer distances. And thankfully telemedicine is becoming a more readily available option as well.
Please take care of yourselves fellow warriors. Your trauma is valid and worthy of attention. Surround yourself with professionals, family members, and friends who respond with empathy and compassion. And distance yourselves from those who are incapable of providing that for you. Validation from others is crucial in the healing process. Lots of healing thoughts, feelings, and love from me to you. Keep going. Your life is important.
