Putting your life in order

How visual health timelines might help people with PTSD

Since founding Pictal Health about a year and a half ago, I’ve been helping patients with mysterious, rare, and complicated health issues visualize their health history and symptoms so they can communicate better with their doctors. As of today, I’ve worked with 45 people, including 10 Veterans (through a grant-funded project with the VA.)

As someone who has experienced mysterious symptoms that are unacknowledged or misunderstood, I’ve been focused on helping others like me; people who don’t fit neatly into diagnostic categories. They often end up bouncing from doctor to doctor, telling their stories over and over. They get lost in our tangled medical system, and organizing and visualizing their health history helps them to a) tell their story with more confidence and b) more efficiently help their doctors understand what they’re experiencing.

Along the way, I’ve worked with a number of people with PTSD (Post-traumatic Stress Disorder): a few Vietnam and Iraq war veterans, women who have lived through assaults and abuse, and a person who experienced a traumatic and life-changing medical error. In fact, I started to see that some of my clients with the most complex and numerous physical symptoms had a trauma in their past.

This led me down an unexpected and fascinating path. I started to wonder, how does trauma affect our physical health? And how does it relate to the types of ‘mystery’ patients I’d been working with? I’d read the about the ACEs study and knew that childhood trauma and abuse can result in chronic health conditions; but I wanted to understand all of this better.

Last summer, just as I began working with a new client with PTSD, I met a doctor and trauma expert named Anita Ravi. Anita works with people who have been subjected to sex trafficking and gender-based violence, and she has just started an organization called PurpLE Health Foundation in New York City. (She also draws amazing comics about her experiences and insights.)

To help me understand how trauma affects people’s health, Anita recommended a book called The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma. If you are interested in this subject, I heartily recommend the book — but be forewarned that it includes harrowing stories of abuse and assault. That said, I’d like to share a few things I learned and relate how all of this ties back to health history visualization.

I was surprised by how many people have experienced a trauma:

• Almost half of the children in our country (34+ million) have experienced at least one traumatic event (source)
• In the U.S., one in three women and one in six men experienced some form of contact sexual violence in their lifetime (source)
• ‘Almost a third of couples engage in violence at some point in their relationship.’ (The Body Keeps the Score, p.11)

Trauma survivors are all around us: in our workplaces, on our teams, at school, at the store. Once I realized the far-reaching scope of this problem, it made me look at my world in a new way. The people who lash out, or shut down, or behave in other ways that are perplexing — it’s possible they have experienced a trauma. It made me feel more empathy for those I’d previously considered difficult.

How does trauma affect our physical health? I learned from the book that it’s fairly common for people with PTSD to experience physical health symptoms, and that these symptoms can take months or years to develop. Here are some brief explanations for why that happens:

“Under normal conditions people react to a threat with a temporary increase in their stress hormones. As soon as the threat is over, the hormones dissipate and the body returns to normal. The stress hormones of traumatized people, in contrast, take much longer to return to baseline and spike quickly and disproportionately in response to mildly stressful stimuli. The insidious effects of constantly elevated stress hormones include memory and attention problems, irritability, and sleep disorders. They also contribute to many long-term health issues, depending on which body system is most vulnerable in a particular individual.” (p.46)

“After trauma the world is experienced with a different nervous system. The survivor’s energy now becomes focused on suppressing inner chaos, at the expense of spontaneous involvement in their life. These attempts to maintain control over unbearable physiological reactions can result in a whole range of physical symptoms, including fibromyalgia, chronic fatigue, and other autoimmune diseases.” (p.53)

To summarize, ongoing stress can cause traumatized people to develop complex health issues that are invisible, difficult to put into words, and misunderstood by our medical system — just the types of conditions I’ve been focusing on in my work. This was a big insight for me. All this time I’ve been focused on people with mysterious and difficult-to-diagnose health problems. But for many people, trauma could be the root cause of of these conditions; this knowledge helps me approach my work with a new sensitivity.

When you picture a person who has PTSD, what comes to your mind? I think of disturbing flashbacks, social isolation, and outbursts of anger. The book goes into scientific detail about why people with PTSD have flashbacks and continue to re-experience the trauma in their body and mind; I won’t get into the biology, but here’s a brief summary:

“When something reminds traumatized people of the past, their right brain reacts as if the traumatic event were happening in the present. But because their left brain is not working very well, they may not be aware that they are re-experiencing and reenacting the past–they are just furious, terrified, enraged, ashamed, or frozen.” (p.45)

Even though their rational mind knows the traumatic event has passed, their brain and body react as if it’s ongoing. They haven’t been able to move forward; there is a sort of wrinkle in time in which they continue to experience the trauma, whether consciously or subconsciously. In a way, they are trapped in the past, unable to move forward.

Because of this, one of the main goals of PTSD treatment is ‘integration’ — internalizing, feeling, and knowing that the past is the past, distinct from the present.

If the problem with PTSD is dissociation, the goal of treatment would be association: integrating the cut-off elements of the trauma into the ongoing narrative of life, so that our brain can recognize that “that was then, and this is now.” (p.182–183)

The book describes many treatments that have helped people with PTSD achieve integration and a feeling of safety and comfort in their bodies, including yoga, EMDR, neurofeedback, and theater programs — but notably excluding talk therapy.

“Trauma results in a fundamental reorganization of the way mind and brain manage perceptions. It changes not only how we think and what we think about, but our very capacity to think. We have discovered that helping victims of trauma find the right words to describe what has happened to them is profoundly meaningful, but usually it is not enough. The act of telling the story doesn’t necessarily alter the automatic physical and hormonal responses of bodies that remain hypervigilant, prepared to be assaulted or violated at any time. For real change to take place, the body needs to learn that the danger has passed and to live in the reality of the present.” (p.21)

When Alissa (not her real name) first reached out to me for help visualizing her health, she had a few motivations. First, she’d experienced years of mysterious symptoms; she’d gone to every type of doctor and tried many different alternative treatments, yet she still had symptoms. She needed help telling and showing her physical health journey to her numerous specialists and holistic practitioners.

But she also had a history of childhood trauma and an assault as an adult. She wanted to map out her life and see if this exercise might help her psychologically process what had happened.

As we started working together, I felt a little anxious. I am not a mental health professional, and I wanted to make sure that the process wouldn’t harm her in any way. I got some advice from my own therapist, and as Alissa and I started to discuss the traumatic things that had happened in her life, I explained that I was going to avoid going into any level of detail in our conversation. My job was only to capture approximate dates (so we could place the events on a timeline), and some text so we could label the event.

Alissa had kept assiduous records about her health for many years, and she shared many detailed spreadsheets and documents with me. This helped me fill in some details that were too difficult to talk about or too hard to remember.

After a few discussions, we had a very full timeline that showed her life events and traumas alongside her physical symptoms, the many treatments regimens and supplements she’d tried over the years, formal diagnoses she’d received, and more. Her timeline was actually the largest I’ve put together thus far. I’m including it below so you can see the information density; I removed all descriptive words, for privacy.

As I’ve felt working with other people with PTSD, I felt some trepidation when it came time to unveil her timeline and walk through it. But, as with others, the emotions it brought up for her were positive. As we reviewed the timeline together, she said, “I feel like I don’t need to collect this info anymore. It’s validating. Before I felt like I had to take control; I had a family who did not see me. This helps me see that what happened was real, and it makes sense — it all makes sense.”

She finally said, “This helps me integrate and make sense of my experiences.” (Yes, she spontaneously used that key word ‘integrate’ — she was clearly knowledgeable about the goals of PTSD treatment.)

Her reaction and choice of words were surprising to me. My personal goal with Pictal Health has been to help people tell their stories and communicate with their healthcare providers more effectively; I hadn’t anticipated the benefits of visually processing the story for people like Alissa.

If the goal of PTSD treatment is integration — knowing in your cells that that was then, and this is now — could it be therapeutic to ‘see time’? My hypothesis is that seeing the traumatic event(s) on a life timeline, and seeing all of the events and milestones that have happened in between then and now, might literally help people ‘put their life in order’ and integrate their experiences.

I have seen this anecdotally with a few other clients including a Veteran with PTSD (“this experience has been very impactful and meaningful to me”) and another patient with complex, chronic health issues preceded by childhood trauma (“It was a several month process to visually see it, then mentally accept it, and then have the courage to tackle physical problems that I thought were never going to go away.”) A formal research study could help determine whether this visual approach could provide a long-term and significant benefit for those with PTSD.

All of this makes me wonder: have others tried this sort of ‘life mapping’ to help people process trauma? A cursory search doesn’t reveal anything. If you are aware of prior related work or research, please let me know.

As always, I want to know what you think. Please drop me a note in the comments or contact me.