Adverse Childhood Experiences and Rheumatoid Disease / Rheumatoid Arthritis (ACEs & RA)

My paternal grandfather developed rheumatoid arthritis as an adult. He lost his mother to suicide when he was only 6 years old. It appears from family lore that he was the one who discovered her. This is an example of the link between adverse childhood experiences and rheumatoid disease.

This post presents research showing that adversity in childhood is a risk factor for rheumatoid arthritis and that it’s not psychological. Studies also explain why there can be such a delay between exposure to difficult events and onset of symptoms and disease. Understanding that trauma and adversity are risk factors is helpful because it offers new tools for working with symptoms and suggests that it is possible to do something to understand, decrease and even improve symptoms. I share a few stories of recovery at the end of this post.

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Environmental Risk Factors are Important Risk Factors for RA/RD

Rheumatoid arthritis (RA) is increasingly referred to as rheumatoid disease (RD) because it is a systemic illness that affects more than the joints (see more on Kelly Young’s RA Warrior blog here, here and in her summary pdf here. You can also read Kelly’s onset story here).

Another often poorly known fact is that RA/RD is not purely a genetic disease. In actuality, non-genetic factors account for at least 50% of the risk for rheumatoid arthritis ⁽¹⁾Edwards, C.J. and C. Cooper, Early environmental factors and rheumatoid arthritis. Clin Exp Immunol, 2006. 143(1): p. 1-5. [full article]; Read more on the blog RA Warrior.

For the most part, studies looking for environmental risk factors have focused on socioeconomics, infections, vitamin D and smoking (my grandfather was a smoker).

Some researchers, however, are beginning to look at the role of events occurring in early life. This is due to the fact that RA/RD can occur in young children, which suggests influences very early in life ⁽²⁾Edwards, 2006. [full article], ⁽³⁾Edwards, C.J., Can the Events of Early Life Influence the Development of Rheumatoid Arthritis? J Rheumatol, 2010. 37(1): p. 1-2. [full article].

It is also because antibodies associated with RA/RD have been shown to arise as early as 22 years before the onset of symptoms ⁽⁴⁾Majka, D.S. and V.M. Holers, Can we accurately predict the development of rheumatoid arthritis in the preclinical phase? Arthritis Rheum, 2003. 48(10): p. 2701-5. [Abstract], even though they do not show up in everyone with the disease ⁽⁵⁾Edwards, 2006. [full article]; author is citing references 22,23.

Adverse Childhood Experiences and Rheumatoid Disease

There is a large and growing body of research showing that traumatic events and household dysfunction in childhood increase risk for chronic illness.

The most well-known set of studies is about adverse childhood experiences (ACEs). There is a clear link between adverse childhood experiences and rheumatoid arthritis.

Findings have been consistent since the first ACE study in 1998 ⁽⁶⁾Felitti, V.J., et al., Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults. The Adverse Childhood Experiences (ACE) Study. Am J Prev Med, 1998. 14(4): p. 245-58. [full article], which surveyed 17,337 adults.

ACEs look at 10 specific types of trauma between the age of 0 until your 18th birthday. These include:

1. loss of a parent through divorce, separation or death
2. mental illness in a parent (such as depression)
3. emotional neglect
4. physical neglect
5. physical abuse
6. emotional abuse
7. sexual abuse
8. having a parent who abuses substances such as alcohol
9. having a member of the household how has spent time in jail
10. domestic violence between the parents

Each type of trauma gives you one point for a maximum of a 10 point ACE score. Each point is associated with an increase in risk of developing a chronic health condition later in life.

One of the hundreds of ACE studies looked specifically at ACEs and risk for autoimmune disease.

People with an ACE score of only 2 had more than twice the hospitalizations for rheumatoid or other autoimmune diseases than people who had an ACE score of zero.

This is a rather staggering statistic because it doesn’t matter which two ACEs you have experienced. Any ACE increases risk in the same way.

An ACE score of two could mean that your parents got divorced and that one of them experienced anxiety or depression.

Some people scoff at the idea that parental divorce, which is so common, might be a risk factor for their particular disease. The ACE studies, however, show that this type of experience is not just a normal, simple, no-big-deal type of event – it actually has an impact on a child and his or her long-term health. Many people who lost a parent to divorce or separation (or death), remember that it wasn’t easy even if they were able to muster up and carry on.

The autoimmune ACE study also found that for every additional ACE after a score of 2, the risk of developing rheumatoid arthritis or some other autoimmune illness increased by 20% ⁽⁷⁾Dube, S. R., et al. (2009). “Cumulative Childhood Stress and Autoimmune Diseases in Adults.” Psychosom Med 71: 243-250. p. 247. [full article].

Of note, the study looking at risk for autoimmune diseases in this group of over 17,000 adults identified RA/RD as the second most common disease in people with a history of ACEs.

The five most common autoimmune diseases found to be increased by ACEs are (p. 245):

• insulin-dependent type 1 diabetes mellitus (23.1% of people with an autoimmune disease),
• rheumatoid arthritis (18.8%),
• autoimmune thrombocytopenia purpura (16.7%),
• idiopathic pulmonary fibrosis (9.1%)
• systemic lupus erythematosus (8.1%).

ACEs are associated with a higher risk of other chronic physical illnesses as well, such as type 2 diabetes, heart disease, obesity, and cancer.

Furthermore, ACEs also increase risk for mental illness such as depression and anxiety; behavioral addictions such as substance abuse, violence and more. This means that parents who are depressed or anxious, or who perpetrate abuse or neglect on their kids very likely have a history of ACEs themselves.

The 10 ACEs in the questionnaire are not meant to cover every type of trauma a person can experience. The survey, for example, does not include bullying, spanking, accidents, growing up in a dangerous neighbourhood and other traumas. The original survey does not include the death of a parent.

What’s important and helpful to know is that ACEs serve as a wake-up call. They provide information and education so that we can begin to recognize that adversity of all kinds has an impact on kids and on health.

Evidence also shows that chronic physical diseases are not psychological effects of trauma.

Disease is affected by how trauma and adversity shape our nervous systems, immune systems, gene function and more (more below about “epigenetics”).

You can learn more about ACEs and get your ACE score in my detailed blog post about the ACE studies and risk for chronic disease.

Other Adverse Childhood Experiences Increase Risk for RA/RD

For my grandfather, the loss of his mother to suicide would have qualified as an adverse childhood experience (ACE).

Early loss of a parent, often by suicide, was also a finding associated with RA/RD in a study exploring dreams in women with the disease ⁽⁸⁾Levitan, H.L., Patterns of hostility revealed in the fantasies and dreams of women with rheumatoid arthritis. Psychother Psychosom, 1981. 35(1): p. 34-43. [Abstract]. What a remarkable, and specific, finding.

Another study looking at the role of traumatic events in risk for RA/RD found no differences in rates of exposure compared to healthy controls. They noted, however, that responses were different in people who developed rheumatoid disease.

In their study, a higher risk for RA/RD was associated with the way a person was able to process the event in that individuals who developed RA/RD were slower to adapt to adverse life events ⁽⁹⁾Carette, S., et al., The role of life events and childhood experiences in the development of rheumatoid arthritis. J Rheumatol, 2000. 27(9): p. 2123-30. [Abstract]. This suggests that there was an inability to resolve these experiences, which is a common characteristic that determines whether an experience is traumatic rather than merely stressful. It also supports another link between adverse childhood experiences and rheumatoid disease / arthritis.

Dr. Gabor Mate has a hugely informative chapter on the role of adversity in risk for RA/RD in chapter 13 of his book “When The Body Says No.”

You can learn more about potential mechanisms by which adversity affects risk for disease in my posts about the cell danger response research, epigenetics, and polyvagal theory and how we can get sick because our nervous systems can get stuck in states of fight, flight or freeze.

ACEs Suggest Numerous Types of Trauma

Learning about my grandfather’s life, I see that he would have experienced additional traumatic events in childhood related to his mother’s suicide.

This is common with ACEs, for when a person has experienced one adverse childhood event, there is a 65% to 93% increase in risk that they’ve been exposed to an additional ACE or more than one ⁽¹⁰⁾See Felitti, 1998.

His mother would have been very distressed to have committed suicide and this may have gone on for some time.

In addition, stress “is a big suppressor of maternal behavior” (described in this article on epigenetics in Discover) and makes it difficult for a woman to attach and connect with her children in a nurturing way ⁽¹¹⁾Hurley, D. (2013). Grandma’s experiences leave a mark on your genes, in Discover. May. Citing researcher Champagne on p.3.

“Your ancestors’ lousy childhoods or excellent adventures might change your personality, bequeathing anxiety or resilience by altering the epigenetic expressions of genes in the brain.”

Hi mother could have suffered depression for some time before her suicide. She also had a 15 month old daughter at the time she died and could have suffered from post partum depression. She likely had a trauma history of her own, as ACEs are also a risk factor for suicide.

My grandfather would likely have also suffered interruptions in connection when his father experienced the loss of his wife.

The quality of attachment between parent and child is another potential source of childhood trauma and is also associated with risk for chronic illness in adults ⁽¹²⁾Puig, J., et al., Predicting Adult Physical Illness From Infant Attachment: A Prospective Longitudinal Study. Health Psychol, 2012 [Abstract].

Studies have found that when a person loses a parent in childhood there is a greater risk of developing PTSD ⁽¹³⁾Koenen, K.C., et al., Early childhood factors associated with the development of post-traumatic stress disorder: results from a longitudinal birth cohort. Psychol Med, 2007. 37(2): p. 181-92. [Abstract]. Children of adults with PTSD, which could have been the case in my grandfather’s life, are also at greater risk of developing PTSD themselves even if they are not exposed to more traumatic events than their peers whose parents do not have PTSD ⁽¹⁴⁾Yehuda, R., et al., Vulnerability to posttraumatic stress disorder in adult offspring of Holocaust survivors. Am J Psychiatry, 1998. 155(9): p. 1163-71. [Abstract] and ⁽¹⁵⁾Yehuda, R., et al., Relationship between posttraumatic stress disorder characteristics of Holocaust survivors and their adult offspring. Am J Psychiatry, 1998. 155(6): p. 841-3. [Abstract].

One of the recurring findings in the ACE studies is that risk for diseases in adulthood increases with every additional ACE. In other words, experiences of adverse childhood events tend to be additive (learn more in this post) ⁽¹⁶⁾Felitti, 1998..

I wonder whether my grandfather’s RA/RD was like a form of Post Traumatic Stress Disorder: a disease that evolved through similar mechanisms but that expressed itself as a chronic physical disease instead of as a mental health condition.

Studies support what many people with chronic illnesses have long suspected, which is that experiences of childhood adversity are an important component in the development of risk for disease, including RA/RD – and that it’s not psychological.

Epigenetics and RA/RD

As described in an introductory post, epigenetic changes result from interactions with environmental factors such as toxins and infections, diet and medications. They also occur as a result of exposure to trauma and stress ⁽¹⁷⁾Francis, R.C., Epigenetics: how environment shapes our genes. 2012, New York: W. W. Norton & Company. 256..

Epigenetic changes are being increasingly identified in RA/RD ⁽¹⁸⁾Javierre, B.M., H. Hernando, and E. Ballestar, Environmental triggers and epigenetic deregulation in autoimmune disease. Discov Med, 2011. 12(67): p. 535-45. [Abstract], ⁽¹⁹⁾Pieringer, H. and A. Studnicka-Benke, What is causing my arthritis, doctor? A glimpse beyond the usual suspects in the pathogenesis of rheumatoid arthritis. QJM, 2013. 106(3): p. 219-28. [full article], ⁽²⁰⁾Klein, K., C. Ospelt, and S. Gay, Epigenetic contributions in the development of rheumatoid arthritis. Arthritis Res Ther, 2012. 14(6): p. 227. [full article], ⁽²¹⁾Ballestar, E., Epigenetic alterations in autoimmune rheumatic diseases. Nat Rev Rheumatol, 2011. 7(5): p. 263-71. [Abstract].

The relevance of epigenetics is that it helps us to understand mechanisms for how life events influence risk for chronic illness. They also explain how being sick is not in your head, not because you are lazy or weak or have a personality flaw.

It’s because life experiences affect how our genes function.

The inspiration from the field of epigenetics is that these changes can be reversible ⁽²²⁾Francis, Epigenetics (2012).. Methylation changes are seen in veterans with PTSD and have been found to decrease after successful treatment and resolution of PTSD ⁽²³⁾Yehuda, R., et al., Lower Methylation of Glucocorticoid Receptor Gene Promoter 1 in Peripheral Blood of Veterans with Posttraumatic Stress Disorder. Biol Psychiatry, 2014. [Abstract] . This raises the question of whether chronic illnesses, including RA/RD, might be reversible too.

Antibodies and the Delay Between Adverse Experiences and Rheumatoid Disease Onset

The existence of antibodies prior to onset of RA/RD is evidence of a latency period ⁽²⁴⁾Kim, J. M. and M. H. Weisman (2000). “When does rheumatoid arthritis begin and why do we need to know?” Arthritis Rheum 43(3): 473-484. [read the Abstract, which links to the full article] , which I describe in my summary of how trauma affects risk for chronic disease.

Latency periods suggest that a disease occurs as a result of a lengthy process that evolves over many years, like an undersea volcano that is invisible until the day it suddenly peaks out of the water.

As few as 5% of people with antibodies for RA/RD may go on to develop the disease ⁽²⁵⁾Kim, (2000), [citing Aho 1985] and for some, the antibodies revert to negative ⁽²⁶⁾Aho, K., et al. (1985). “Rheumatoid factor seroconversions in relation to clinical rheumatoid arthritis.” Ann Clin Res 17(1): 15-18. [Abstract]. In other words, even people who are at risk for this disease may recover, never progress, or fail to ever develop it.

This too reflects the beauty of what we are learning about environmental risk factors and epigenetics: more support for the possibility of reversibility.

Similar patterns are seen in type 1 diabetes.

Why Do ACEs Matter?

Knowing if there are links between adverse childhood experiences and rheumatoid arthritis can help you know factors that may have contributed to your risk. As a result, it can give you new tools and options for understanding RA/RD, making sense of symptoms and flares, and explore whether you might be able to do things to manage or reduce symptoms or that might help on a journey of healing.

When ACEs affect risk for RA/RD it means that your disease is not entirely genetic. It tells you that it’s not in your head, that being sick is not your fault and that there may be things you can do. The examples of rheumatoid arthritis recovery stories below can offer some source of hope.

One study using the Internal Family Systems (IFS) approach found that participation in a group for 9 months helped decrease pain and improve physical activity. The changes were still present a year after treatment ⁽²⁷⁾Shadick, N. A., et al. (2013). “A Randomized Controlled Trial of an Internal Family Systems-based Psychotherapeutic Intervention on Outcomes in Rheumatoid Arthritis: A Proof-of-Concept Study.” Journal of Rheumatology.

I’ve created a list of tools, books and therapies for working with ACEs from a nervous system perspective. These posts give you a place to start and offer some ways of addressing the effects of trauma and adversity, even if events happened many years in your past.

Rheumatoid Arthritis Recovery Stories

Since writing this post I’ve modified the section below to more clearly reflect the tender care with which I want to explore whether it might be possible to recover from a chronic illness. In my own experience, I often appreciate hearing that others have recovered from chronic fatigue syndrome (ME/CFS). I find that it gives me hope and conveys the possibility that my disease may not be as solid or as set in stone as it feels. But when I hear about these stories I often have other feelings as well. Feelings of annoyance, for example, that despite trying many, many things for over 15 years, including ones that have worked for others, I am still sick. Frustration that, like so many others who are also still sick, I’ve been working on my health full-time and there is clearly no obvious cure, nor an approach that works for everyone. Hearing of recovery also sometimes evokes a sense of failure, discouragement and even self-judgment that I must not be doing enough or trying hard enough…

So, in the process of hearing other people’s stories and looking to learn from those who are improving or who have recovered, I do not want to assume that the process is obvious, nor certain; nor that recovery is clear, or easy. I do not want to add to the voices that blame or assume that those of us who are still sick aren’t doing it right, or doing enough.

Ultimately, even though I have yet to fully recover from my own chronic illness, I remain curious about what is possible. Is there a better way to understand factors that might influence our health? Are there different ways or additional tools we can use to increase our chances of doing better, or even slowing things down?

Here are a few stories I’ve found that may help us feel hope, or to feel a sense of possibility, or to keep journeying with new or different questions.

I have found stories of a small number of people who have recovered from RA/RD. In addition to epigenetic studies and findings that antibodies do not always progress to RA/RD, stories of recovery give the rest of us hope. I suspect that many more people have recovered than we know about because they had no one to tell their stories to.

Two people recovered from RA/RD with anti-inflammatory diets. One is journalist Susannah Meadows’ young son, whose journey is described in a New York Times article called The Boy with the Thorn in his Joints.

The second journey of recovery from RA/RD is Katrina’s. Katrina followed the Gut and Psychology Syndrome (GAPS) diet for 5 years and describes how she had to go very very slowly. In her letter to Dr. Natascha Campbell-McBride, the neurologist and neurosurgeon who developed the diet to treat her son’s autism (he recovered too), Katrina explains that even the deformities in her joints resolved with time.

A 3rd person who recovered was a woman who attended one of my talks on the role of trauma in chronic illness. She said that she had worked intensively with anger and recovered after being able to work through her feelings. She too, had RA/RD (and not the less debilitating and more common illness called osteoarthritis). This recovery may have been due to a resolution of a trauma response.

When looking at risk factors for chronic illness, detailed case studies are a valuable and underestimated tool. The role of stress and trauma begins to take shape when we look for details, and stories help us see the complexity – and subtlety – of many of our life experiences. These experiences may be stressful or resourcing, and may be linked to the evolution of a disease or the successful resolution of a disease before it ever arises. Given what we are learning about epigenetics, working with early trauma and attachment relationships may be a useful tool for working with chronic illness. Diet and other approaches may become better understood as key tools as well.

Related Posts:

All Rheumatoid Arthritis / Disease Posts

Summary of the Science on Trauma and Risk for Chronic Disease

ACEs and Fact Sheets to Educate Your Doctor

Rheumatoid Awareness Day 2016: Causes, Links and More Stories of Recovery

Adverse Babyhood Experiences and RA/RD: Events in Pregnancy, Birth and Infancy that Can Increase Risk

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