It has been awhile since I’ve written. I feel too young to be writing it, but I have been dealing with some serious health issues. After being ill for a long time, I stubbornly visited a new doctor who referred me on to a specialist and now I have a diagnosis for what’s been ailing me for years and increasingly getting worse until this summer, when I was too sick and weak for many weeks to even sit at my home computer: an autoimmune condition called Sjogren’s Syndrome, primary type.
The diagnosis is a relief in some ways: I now have an explanation for a collection of confusing symptoms and I have a starting place for learning how to manage those symptoms and work toward wellness — well, at least more wellness than I’ve been having lately. But in other ways, it’s a hard thing to swallow. I was hopeful for a diagnosis that included some sort of easy fix, like a diet or magic pill that took it all away. The treatment for Sjogren’s is far from that.
My doctor feels that I may have had Sjogren’s for much longer than I thought I did, that my recurrent kidney stones starting way back in college may have been my first sign of things to come. But knowing what I know from my journalistic connections through Attachment Parenting International, I wonder if there weren’t tell-tale signs even earlier.
Last spring, I had the opportunity to talk with a fellow health journalist, Jane Ellen Stevens, editor of ACEs Too High, a news site that reports on Adverse Childhood Experiences (ACEs) and our society. ACEs refer to a study by the Centers for Disease Control and Prevention and the Kaiser Permanente’s Health Appraisal Clinic in San Diego, California, USA. The ACE Study investigated associations between childhood maltreatment and later-life health and well-being.
The results suggest that certain adverse childhood experiences, or ACEs, are major risk factors for the leading causes of illness and death as well as poor quality of life in the United States. The theory is that ACEs form the foundation for social, emotional and cognitive impairment that then lead to adoption of health-risk behaviors, which then lead to disease, disability and social problems.
So what kinds of experiences are considered ACEs? ACEs Too High provides a quiz where readers can determine their ACE score, as well as their Resilience Score. Most of the questions ask about events that would be classified as overt abuse or neglect, but there is a question included that seems fairly common in our society: divorce. As a person’s ACE score increases, so do the risks; an ACE score of 4 or more puts a person at high risk. On the flip side of the ACE coin is resilience, and ACEs Too High includes that quiz, too, under the ACE quiz. Questions for this quiz revolve around warm, loving interactions with parents.
Many scientific researchers will tell you that the ACE Study is specifically for at-risk populations, people who have multiple risk factors such as extreme poverty, severe mental illness, etc., to a point where people are unable to escape the chronic and toxic stress in their lives. But Jane’s journalistic research delves into the idea–and I believe, fact–that ACEs are not limited to the most disadvantaged of our society, that the effect of ACEs can be felt through all socioeconomic statuses of Western culture.
There are others who feel this same way, too. For example, researchers involved with the ACE Study admit that just one-third of the middle-class population included in the ACE Study had an ACE score of 0 (zero). And if any one category was experienced, there was an 87% likelihood that at least one additional category was present.
“One in six individuals had an ACE score of 4 or more, and one in nine had an ACE score of 5 or more. Thus, every physician sees several high ACE score patients each day. Typically, they are the most difficult patients of the day. Women were 50% more likely than men to have experienced five or more categories of adverse childhood experiences. We believe that here is a key to what in mainstream epidemiology appears as women’s natural proneness to ill-defined health problems like fibromyalgia, chronic fatigue syndrome, obesity, irritable bowel syndrome and chronic non-malignant pain syndromes. In light of our findings, we now see these as medical constructs, artifacts resulting from medical blindness to social realities and ignorance of the impact of gender.”
~ Vincent J. Felitti, MD and Robert F. Anda, MD, MS, co-principal investigators, ACE Study
Which brings me back to my diagnosis of Sjogren’s Syndrome, which like many autoimmune disorders could probably be defined as a “chronic non-malignant pain syndrome.”
I do not feel that my childhood was adverse, and my ACE score is low, but I do know that was a very anxious child and continue to deal with anxiety from time to time. I feel that ACEs may not be the full picture. In my journalistic work in child temperament, I feel that this also has a huge influence in how a child may perceive an ACE or even how his/her ACE score impacts personal health and mental well-being. Therefore, in my opinion, the intersection of child temperament and ACE could be highly individualistic. While the trends found in the ACE Study are still there, some child temperaments could be more prone to the negative effects of ACEs so that fewer ACEs could affect one person more so than another, and vice versa. While there is nothing scientific about my gut feeling, I have this nagging feeling that my lifelong struggle with anxiety probably has something to do with my illness.
Moving forward, this knowledge gives me even more motivation to continue educating and supporting parents to raise their children in a way that promote secure attachment, healthy parent-child relationships, emotional literacy and, ultimately, Resilience Score.