There's a huge focus on trauma these days. In the mental health field, there's a movement toward Trauma Informed Care, and treatments such as Trauma Focused Cognitive Behavioral Therapy has become a popular Evidenced Based Practice for helping children who have experienced traumatic events. The VA is spending more time focusing on treatment for current and former service members who experience Post Traumatic Stress Disorder (PTSD), with excellent results.
Trauma causes changes to the brain. While not everyone will develop PTSD from a traumatic event-or series of traumatic events-some do. And while many may associate PTSD with one traumatic event, the reality is that many people experience ongoing trauma in their lives, developing Chronic Post Traumatic Stress Disorder (PTSD-C). People who develop PTSD or PTSD-C may experience flashbacks of the events; nightmares/night terrors; dissociation; avoidance of places, people, or other things that remind the person of the trauma(s); hyper-arousal and/or hyper-vigilance; and numbing behavior amongst other symptoms.
A few years ago, my PCP (at the time) left to go on to a job with the state. During our last visit, she asked me if I minded if she asked me a few questions for a project that she was really interested in, and would be working on at the state level. She wanted to know if I had experienced trauma in my childhood, as she was interested in studying the link between chronic illness and early trauma. "Sure", I said, with a shrug. I mean, I didn't have an easy childhood, but that's true for pretty much everyone, right?
We started with my health history as a kid, for a baseline. I was a pretty sick kid. I dealt with a lot of respiratory issues in my childhood, and spent a huge amount of time at the doctor. One of my earliest memories is being in the hospital for pneumonia. I was proud of my ability to swallow big pills early on-which was necessary, because I was on antibiotics as frequently as I was at the doc's. (This was 30+ years ago when antibiotics were prescribed for everything.)
"That must have been difficult," my PCP responded. I don't remember it being particularly difficult, but I acknowledged that it was hard missing school a great deal and not being able to participate in sports without breathing difficulties. I was frequently teased by the other kids because of my challenges in gym class. (But I outdid everyone in the flexibility based activities, a perk of Joint Hypermobility Syndrome/Ehlers Danlos Syndrome, Hypermobility Type.) I don't remember anyone giving me a hard time about missing school, but I do remember the teasing and comments from kids and adults about my difficulties with sports. Looking back, if someone else reported the same experience, I would have classified it as bullying, but compared to what I experienced as I got older, this was nothing.
When she asked about bullying, again I shrugged. "Sure," I answered. Didn't everybody experience that?
But as she began to ask more pointed questions about my experiences, my clinical mind had to point out, "No, this was not a normal childhood experience. This was more."
My family moved into a new neighborhood just before my 6th grade year. I was able to stay in the same elementary school, and was generally pretty excited about the new neighborhood with some kids my age.
Unfortunately, over the course of the next year and continuing until I left for college, I was the target of bullying by those same kids. Because I also went to school with some of them, it was non-stop. What made the situation worse was several families in the neighborhood also became involved in bullying me and my family. For 7+ years, my family was the target of lies, rumors, property destruction, and harassing phone calls. There were multiple times that adults were the perpetrators of these rumors and malicious gossip. At school, I was the subject of rumors, lies, horrible notes left for me in my lockers, destruction of my property, and physically assaultive behavior. As I became more ill in my teenage years, and was later diagnosed with Fibromyalgia, the bullying became worse. As I gained weight from the medications, people who I thought were friends started leaving me out of things, spreading rumors about me, and just generally being horrible to me. I was constantly on alert at school, and had to be on high alert at home as well. On top of all of this, I was dealing with being diagnosed with a condition that most medical professionals didn't believe existed, the treatments were "best guesses that this might work" and causing major side effects, and I was discovering day-by-day what this diagnosis was going to mean for me. (I continue to discover what the diagnosis of Fibromyalgia means as time goes on.)
I left the bullies of high school behind and found the bullies of the medical world. I remember sitting in a new Rheumatologist's office, in tears, as he berated me for being lazy and mentally ill, telling me my pain wasn't real. (That would be an experience I would continue to have with Rheumatology and Psychiatry, alike, unfortunately.) Having a diagnosis of Major Depressive Disorder in addition to my Fibromyalgia meant that very few medical professionals took me seriously. Even my PCP at that time became frustrated with me not being "an easy patient to treat" and just started prescribing things without scheduling an appointment with me before finally dropping me as a patient.
New doctors (to me) would frequently ignore my pain symptoms because I was overweight, a woman, or both. They would point to my psych history and tell me that my pain was "all in my head." Unfortunately, these are not experiences that are in the distant past. I had a recent visit with a Pain Psychiatrist who belittled me for my weight, lectured me on nutrition, and completely ignored the reason I was seeing him. Going to see a new doctor is incredibly anxiety inducing, because I never know what kind of treatment I'll receive.
It's hard enough living in a body that finds new and interesting ways to torture itself, where each day brings pain and fatigue. It's hugely isolating being sick like this, with conditions where there is no answer and very little support. Generally, people do not take chronic illness seriously unless they hear it's Cancer or Cancer-related, even though these chronic illnesses may be even more debilitating, require more ongoing treatment, and can be just as fatal if not treated.
Trying to work while being sick, and missing work, brings it's own trauma. I've experienced co-workers talking behind my back about me (sometimes right outside my closed door), rumors being spread about me at work, and all sorts of comments from supervisors that a labor attorney would have a field day with if I was ever one to be litigious. I've had reasonable accommodations denied to me, after they were granted. I've been harassed at home by supervisors when I've been too ill to be at work. Despite being one of the best and brightest in my field, I've been bullied by coworkers in the past, with comments about my "invisible illness." There's also the guilt that goes along with missing work--I did not get licensed and a second masters degree to be at home and not do my job. (I want to make it clear this is not occurring in my current employment; what I am referring to are past employers.)
The anxiety of losing out on income because of illness is horrendous. Will I be able to pay the bills? What if there is an emergency? Add to this that there are frequently large medical bills (even with medical insurance), taking up large chunks of what income is available. Medical expenses are the Number 1 reason people end up filing bankruptcy in America. It's not uncommon for people who are chronically ill to have to make the decision between groceries or medications, because there simply isn't enough money for both that month.
And finally, the public view and response to someone like me, just compounds the trauma of living with chronic illness. I'm relatively young (39, but am told I look younger), look as if I should be healthy, but I'm not. I use a disabled parking placard. Between the chronic pain of Fibromyalgia, Unspecified Autoimmune Disorder, and Joint Hypermobility Syndrome/Ehlers Danlos Syndrome, Hypermobility Type; the tendency to dislocate and sublux joints due to Joint Hypermobility Syndrome/Ehlers Danlos Syndrome; and the heat intolerance, tachycardia, dizziness, and tendency to syncope due to Dysautonomia, walking long distances or standing for long periods of time isn't something I can do. Like many Chronic Illness Warriors, I've been on the receiving end of horrifying comments when I've used the placard. This has led to anxiety about using the placard. (I also have anxiety when using my service animal, since a recent bad experience while being at the infusion center.)
All of this has lead me to be hypervigilant when out, avoiding going out and interacting with people, panic attacks, nightmares, and frequent flashbacks. I meet the diagnostic criteria for PTSD, and since this has been ongoing, and continues to be an ongoing situation, it's chronic. I'm not the only Chronic Pain Warrior/Chronic Illness Warrior that also has developed PTSD-C from their illness(es) and experience(s); it's actually pretty common.
For resources and help with coping with trauma, check out these sites:
National Alliance on Mental Illness: This is a great resource for finding community resources, information, education on diagnoses, peer groups, and other items that impact individuals who cope with mental illness.
Psychology Today: Good resource to locate professionals for counseling and psychiatry; it's also a good place to find articles and tools.
National Suicide Prevention Hotline: If you feel like harming yourself or need someone to talk to, call 1-800-273-8255.
Definitions of conditions listed in my medical chart
