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What I Learned When I Faced Medical Trauma From Chronic Illness Multiple Times

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Editor's Note

If you’ve experienced sexual abuse or assault, the following post could be potentially triggering. You can contact The National Sexual Assault Telephone Hotline at 1-800-656-4673.

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 medical trauma. I’m writing this blog entry in large part to help me cope with my own recent medical trauma. It will likely be long, because I specialize in trauma therapy, and I’m passionate about helping others manage symptoms and heal from trauma.

Before I dive in, I’d like to discuss a few important things. 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 have acute traumas from a single incident, but many have recurring, complex trauma. I also have complex post-traumatic stress disorder (C-PTSD). According to the current Diagnostic and Statistical Manual of Mental Disorders, this is not presently an official diagnosable condition. However, based on my personal and lengthy professional trauma experience, I believe it very much should be. 

A trigger is anything that reminds you of a previous trauma. Triggers can cause your body and mind to react as if the trauma is occurring in the present. This  reaction 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, like movies, TV shows, books, and social media posts. 

Trauma triggers are very real. For instance, 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 people were sharing their own personal stories on this page. While that can be really helpful in terms of education, bringing a long-hidden issue into the spotlight, holding abusers accountable, and helping other survivors recognize and validate their own sexual traumas, for me it was an extremely triggering experience, and I had to stop following the page. I’m trying my best to keep that from happening here.

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 with your own thoughts and feelings while reading this post or any other medium highlighting trauma.

Medical trauma can occur in many settings — physician offices, pharmacies, hospitals, and even psychotherapists’ 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, which leads to countertransference.

Countertransference occurs when a therapist is unaware of their own thoughts and feelings and reacts to a client as a result of their own emotional challenges. This can be especially damaging for clients who are seeking help with trauma. Psychotherapists are real people, and we all have our own thoughts, experiences, and feelings that can be beneficial in helping our clients. However, it’s also important that we are aware enough of ourselves to not allow our thoughts and feelings to negatively impact our clients. I’ve seen too many clients who need to process trauma a previous therapist caused them. If this describes you, I sincerely apologize on your therapist’s 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 hard not to cause more trauma for my already-struggling clients.

For those of us with chronic illness, simply finding the right specialist to diagnose and treat us can be a traumatic experience. Many people have to wait decades to be properly diagnosed with psoriatic arthritis and a myriad of other complicated conditions. Fortunately, my psoriatic arthritis diagnosis journey was relatively brief, but I still saw multiple specialists before miraculously landing in my current rheumatologist’s office. To this day, he remains my favorite physician. 

The medical world is complicated and hard to navigate, especially for new patients. We often have to be our own advocates. Not having a proper diagnosis can be isolating too. So if you’re still searching for a helpful professional, 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, you may have trauma around your diagnosis. I certainly do. Soon after starting with my first rheumatologist, he left the practice. When I later tracked him down in his current practice, I can see why he may have left. 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.

Despite reassurances from my first “rheumy” that the transfer to another doctor in the practice would be completely fine, my anxiety proved me right. This second physician spent almost every appointment questioning my diagnosis. I’ve since discovered that my case is particularly tricky, and I tend to end up with all the rare things. To reframe it, when my daughter was really into unicorns, I liked to think of myself as a rare, precious unicorn. Now that she is past this stage, and unicorns are apparently no longer “cool,” I refer to myself as a rare, precious gem, like in “Steven Universe.”

This second “rheumy” seemed like a nice person and expressed some compassion for me, so I stayed with him for far too long. After every appointment, I spent the months until my next appointment ruminating over every last word he said. 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 can be extremely important in the chronic illness world. It’s our gateway to proper treatment, understanding from our significant others, and support from fellow warriors. This was medical trauma — which was likely unintentional on the part of this “rheumy,” but it was 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, and not remembering important details, find another one who can competently manage your symptoms and who will give you the attention you need and deserve.

Pharmacies can also cause unnecessary anxiety for patients. Delayed shipments of specialty medications, not advocating for patients’ medications to be covered by insurance, billing errors, crucial out-of-stock medications, and medication shortages can be traumatic over time. It’s especially frustrating when we’re forced to use a particular pharmacy and this same company also manages your prescription benefits. When this happens repeatedly for those of us in the chronic illness community, it can turn into medical trauma. These things are often out of our control, but keep advocating for yourself, and find physicians who will navigate the process with you.

Hospitals and emergency rooms are also a major source of trauma for chronic illness patients. They are often not set up to deal with the intricacies of rare or complicated medical conditions. For instance, I never want to visit an ER again. I’ve had gastrointestinal (GI) challenges for most of my life, but as a “helper,” I have historically paid very little attention to my own body. This, combined with my extremely high pain tolerance, kept me from pursuing proper medical attention. My few medical visits for my GI system involved physicians telling me my symptoms were stress-related, likely because I underemphasized my symptoms and 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 rheumatologist, I was taking a biologic that caused UC flares. This biologic worked extremely well for my psoriatic arthritis, so it was devastating when its side effects led to a life-threatening UC flare. I think I still may be my rheumatologist’s only patient to have this experience. 

After a visit with my primary care physician (PCP), my PCP’s staff diligently called a local GI specialist until finally they found an opening 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 when I spent the entire night on the toilet or rocking myself on my bathroom floor. The pain felt unreal. Out of sheer desperation, I decided to go to the emergency room. I was mainly hoping for some pain relief to help with my symptoms. I chose Johns Hopkins because I thought they would be best equipped to deal with my autoimmune condition.

When I arrived in the ER, I saw large signs stating that pain meds were not given to chronic pain patients. At this point, I had only ever taken one type of medication for my pain, but because of my severely flaring GI system, I was no longer able to tolerate it. After checking in at the front desk, I waited for over an hour to be seen in triage. When in triage, after explaining my symptoms, a nurse set up an IV that was never used and gave me one pill… that my system couldn’t tolerate. I was sent back to wait in an uncomfortable waiting room chair for about 10 hours. Finally at around 2 a.m., I was taken back to be seen by an ER physician. At this point, a student was the main treating physician. He ordered no 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 was 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 so I could wait for my husband to pick me up. I’m not rattled easily, but that ER can be really scary at that time of night, especially for a tiny woman like me. I went home feeling even worse than I had 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 a new medication. A colonoscopy a couple of days later revealed severe ulceration throughout my entire colon and rectal area. The pictures from that exam look awful, and I could have died if I waited any longer to be treated. I was in “survival mode” at the time, so it took me many months before I realized how traumatic this ER visit was for me. I have since avoided going to an ER at all costs. Fellow chronic illness warriors who have been through trauma in the emergency room — your trauma is real. Significant others, please validate your loved ones’ trauma for them. 

Medical trauma can also occur as a result of the medications you take to treat conditions and their symptoms. Because of the trauma and stigma associated with using certain medications for chronic pain, when my functional medicine physician discussed an alternative treatment that seemed hopeful, I was eager to try it. My medication arrived in the mail from a specialized compounding pharmacy. I was using this particular medication for off-label usage, 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.

Two nights ago, I injected 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. Soon after that, my throat started closing too. This led to a panic attack because I could no longer take deep breaths. Throughout the night, I was having painful GI symptoms — my abdominal pain rivaled the pain I felt during my UC flare experience. Finally, at about 5 a.m., my body must have settled down enough for me to get a few minutes of sleep. 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 and ask for help. The next day, my husband told me that I should have woken him up to take me to the ER. But because of my last ER experience, going to the ER didn’t even seem like an option.

I’m a chronic illness warrior, and I’m used to maintaining a family and a work schedule at pain levels that would keep most people in bed all day, so 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, this 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, which is definitely not a given.

My physician scheduled an emergency hourlong telehealth appointment for me. Not only was my physician present, but the head of the practice and a student was there too. 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 to the medication, but the other physician hadn’t either. Together they determined I experienced a rare allergic reaction, and so this medication was immediately placed on my “never take again” list. They responded compassionately, expressed great empathy for me, and never questioned my experience, which are all things I need to have a trusting relationship with a physician and their practice. And because of this, a few days later, I am finally able to acknowledge the magnitude and significance of the trauma I experienced and allow myself to rest.

I hope that all of my fellow warriors have physicians like this in their lives. We are literally entrusting our lives to these professionals. And knowing that we are seen, believed, respected, and validated is crucial. If you do not feel like your physician regularly acts this way, please find one who will if at all possible. You are worth that. I recognize that I’m speaking from a place of privilege, and I live in an area with a plethora of competent physicians to choose from. But finding a great physician is worth the time and effort of traveling longer distances if you can afford to do so. Thankfully, telehealth is becoming a more readily available option as well.

Please take care of yourselves, fellow warriors. Your medical trauma is valid and worthy of attention. Surround yourself with professionals, family members, and friends who respond to your trauma with empathy and compassion, and distance yourselves from those who are incapable of providing that for you. Validation from others can be crucial to the healing process, so I’m sending you lots of healing thoughts, feelings, and love. Keep going. Your life is important, and your medical trauma matters.

Getty image by Wavebreakmedia.

Originally published: March 15, 2022
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