Rheumatic Disease & Medical Trauma

As I sat waiting for my most recent medical tests, my anxiety amped up. I was required to fast and wasn’t even allowed to drink water in preparation. And of course, I needed to get an IV. 

When I was younger, I wasn’t bothered by needles, bloodwork, or IVs. But as my medical care for Vasculitis and Crohn’s has required more interventions over the years, my veins have also become more scarred. Previously, this has meant multiple “attempts” since my veins are tricky to get on a good day, and it’s much worse when I’m dehydrated. So even though I’m an adult who has had more IVs throughout my lifetime than most people, it is more stressful for me now than it was before. 

As I sat there waiting, I tried to keep my arms warm and focused on breathing slowly and steadily. The nurse assigned to prepare me for the procedure took five minutes attempting to locate a good spot before calling over her more seasoned colleague, Olga.

“I don’t want to ruin one of the better spots,” she told me.

Olga came into the cubicle. She was quiet, gentle, and determined. She examined all the places an IV would typically go and then she got to work. We didn’t speak much. Olga was able to land the IV in my dehydrated arm on the first try and it didn’t even hurt. Technically, the procedure hadn’t even began, but I was relieved. One of the hardest parts for me was over. Whatever happened next, I could handle. This moment in the treatment process is a common experience for me as a person living with chronic illness, PTSD, and medical trauma specifically.

Medical trauma is important to understand. In some ways, medical trauma, like other types of traumatic stress injury, are not simply about what event has happened. Traumatic injury occurs when there are factors that prevent the individual from making sense of what has happened effectively. With any traumatic stress injury, or PTSD, survivors struggle to recognize safety and orient to where they are in time. There can be a variety of triggers that elicit a fear response, some of which are obvious and make sense based on previous events, and others that are harder to pinpoint their origins.

For me, getting an IV or having bloodwork has become a triggering event because after I underwent serious, lifesaving surgery IVs were necessary for my survival and improved comfort. However, getting them in following the surgery were a struggle, involving multiple attempts with multiple nurses every few days during a hospitalization that lasted over three weeks. Each time, the stakes were high. And I felt scared and powerless. I was fatigued, in pain, experiencing a lack of nutrition, and an overall sense of fear throughout that time. All of these contributed to IVs becoming a big deal in my brain and therefore a trigger for panic. Now each time I face this procedure, especially if I know I’m dehydrated, I get scared. Fear isn’t rational. It operates on emotion, sensation, instinct and deep body memory. I don’t find any amount of positive self-talk helpful during these moments.

The panic attacks I experience at these times are generally silent. I go into shutdown mode and appear dazed. For clinicians working with me, I’m not sure that they even notice because I’m not a problem for them in this state. However, these panic-fueled moments can leave me reeling for days afterwards. Feeling exhausted with a sense of doom that is a storm cloud over my days. It’s impossible to connect with my family and friends. It can be difficult to sleep, which makes all of it worse.

I don’t think that the providers who have “missed” in the past are to blame. Before trauma therapy, when an IV miss occurred, I had fierce anger at my own body for being so uncooperative. I used to get stuck in a shame-based loop that made it harder to get on with my day-to-day life. It used to feel like the timeline got reversed, like I was back during that intense hospitalization, and the stakes were just as high- as a result I felt just as vulnerable, scared, and helpless. For whatever reason, I used to believe that being chronically ill was my fault. That belief- a negative personal cognition- was not true nor helpful.

Seeking mental health assessment and support, including a PTSD diagnosis and intensive trauma therapy, have helped me. I can do things before potentially triggering moments to be more grounded. I can anticipate the panic I might experience and intervene through my body- by regulating my breathing, directing where I focus my senses, and through paced movement. By purposefully, staying connected to the here and now in my body, I don’t get lost in the past then catastrophize and panic. Following the event, even if I panic, I am kind to myself and focus on nourishing my nervous system by going for a walk, listening to music or a visualization, or booking time with my psychotherapist. I spend time and energy reminding myself that I am safe, that I can trust my providers, and that these illnesses and challenges are not my fault. This self-compassionate approach is a lifeline to living with chronic medical conditions and medical trauma simultaneously.

There are many psychotherapy approaches that can help people with chronic illness and medical trauma. The ones that were helpful to me and that I use with my clients are: Mindful Self-compassion, Dialectical Behavior Therapy, Acceptance and Commitment Therapy, and EMDR. Because of the somatic aspect of my traumatic experience, I didn’t find that exclusively thinking-based approaches helpful, however each is person is different. I also think medications that help people get through challenging moments are incredibly important when prescribed appropriately for the individual. I have benefitted from both Ativan and Zopiclone (a sleeping pill) in the past. However, these need to be prescribed carefully and in combination with psychotherapy because of the risk of dependence and harm with these medications. Medications and psychotherapy complement each other.

I hope that others living with rheumatic disease who notice impacts of traumatic medical events in their own life will confide in their care providers and seek support through a qualified mental health clinician. I also hope that care providers will begin to inquire about symptoms of medical trauma with their patients and direct them to appropriate support. There are treatments that help and no one needs to suffer alone.