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Adverse Multigenerational Experiences (AMEs), Rheumatoid Disease and ME/CFS

Veronique Mead, MD, MA · October 31, 2014 · 5 Comments

adverse multigenerational experiences (AMEs) may be risk factors for rheumatoid disease / arthritis and me/cfs
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My paternal grandfather had rheumatoid arthritis (RA). I discovered some secrets about his life when I looked into his story because there are links between multigenerational trauma and chronic illness. This is because trauma that occurs in our parents’ or grandparents’ lives or in their family’s lives are risk factors for chronic disease. I suspected such events might have also influenced my chronic fatigue. I build on the most well known trauma research in adverse childhood experiences (ACEs) to refer to this kind of trauma as adverse multigenerational experiences (AMEs).

No one else in my family has rheumatoid disease although I am not the only one with chronic fatigue (ME/CFS for myalgic encephalitis / chronic fatigue syndrome).

On my father’s side, I have two aunts who have had long-standing severe ME/CFS. They are twins, and they have also had debilitating multiple chemical sensitivities (MCS). The combination of these illnesses made both my aunts essentially housebound.

On my mother’s side I have 3 cousins with ME/CFS.

I first wrote this post on Hallowe’en and it seemed fitting to write about explorations I’ve made into the history of family members who have died.

I’ve been particularly curious about the life of my paternal grandfather, who’s in the photo in this post with his sister, perhaps because he’s been like a ghost in the family tree.

This is in large part because he left his wife and kids when my father was two and my aunts were only a few months old. As a result I’ve known very little about him.

In my geneology research in recent years I’ve learned about traumatic events in my grandfather’s life, including a suicide, that never quite made it into the family lore.

The other pull to exploring my grandfather’s life is probably the fact that he, out of my four grandparents, was the only one who had a chronic illness.

His rheumatoid arthritis was severe and I remember, on meeting him briefly as a young child, noticing with a sense of curiosity and some kind of early respectful awareness, the large knubbliness of his knuckles and fingers that jumbled together and pointed away from his hands at extreme angles. He didn’t talk about it with us.

As I learned about trauma I wondered whether difficult events might have played a role in the initiation and onset of his disease. And I wondered whether transgenerational trauma influenced my chronic fatigue as well as the chronic illnesses of his daughters.

The genogram below shows the four of us who have chronic illnesses on this side of my dad’s family, in blue. I’m represented by the circle, which represents the female gender, at the very bottom. The male gender is represented by the square.

genogram with colors showing chronic illness in 3 generations

In talking with my father as I did some family research, I learned for the first time that his own dad had once discovered the body of a relative who had just died.

It was thought that the relative might have been an aunt of my grandfather’s, and that maybe she’d committed suicide.

A genogram that one of my aunts with ME/CFS and MCS made many years ago lists a suicide, but identifies the person as my great grandfather.

This kind of confusion about details of family history suggests that the cause of death could have been unknown, or that it might have been too painful to talk about. I would expect that it would have been remarkably difficult to cope with or talk about indeed if there had been a suicide.

The big surprise in my search through records about my grandfather (let’s call him Sean) was learning that it was his mother who had committed suicide. It was 1908 and she was 32 years old.

Sean was 6 years old.

His sister was 14 months old.

I cannot even imagine what that would have been like. The unbearable, overwhelming shock of it.

And the fact that he may have been the one who found her.

Looking through my grandfather’s medical records, the level of difficulty he had in coping with this experience is suggested in his medical histories, all of which report the age and cause of his mother’s death as “unknown.”

It is from his mother’s death certificate (below), which I requested as part of my geneology research, that I learned about this important event in my family history.

My great grandmother, Christine, died from creolin poisoning.

The “contributing cause” states that it was “taken with suicidal intent.”

I was surprised to discover in writing this post that creolin, a disinfectant and household cleaner, was a common method used by women who committed suicide between 1900 and 1915. I found the information on this Coroner Case File Wiki website.

Death-Certificate paternal grandmother

Until I started researching my family history, I hadn’t realized how powerful it could be to unearth the ghosts in my past.

There was something completely unexpected in seeing, and feeling, the impact of such a tragedy in my family history.

Seeing my great grandmother’s name, and her actual death certificate, was like holding a piece of truth when what I’d had was an unrecognized hole in the tapestry.

Cristena Estelle, as I found her called as a child in a census, became real to me.

This kind of reaction, from a sense of validation or insight, of grief or empowerment, is something we often experience on learning about our past. You can see what the experiences of learning about your past are like on the weekly PBS series Finding Your Roots. 

Ghosts and Secrets in our Family History

genogram showing colors for chronic illness and trauma

Secrets in our family histories can be very subtle even as they influence us in unexpected ways. Just as the repression of emotions that arise from overwhelming experiences can affect our risk for chronic illness, so can the suppression and loss of stories about our ancestors play a role in our physical, emotional, and mental health.

Secrets can also lead us to unconsciously repeat and reenact old traumas. I wonder if one of the reasons my grandfather left his family so soon after his daughters were born, for example, had anything to do with an unconscious reenactment of being deserted so painfully by his own mother soon after the birth of his sister.

I learned a great deal about the role of secrets, reenactments, patterns and more from the book The Ancestor Syndrome. You can also read a description of the author’s work in transgenerational psychotherapy. I’ve also used this book by Mark Wolynn that came out in 2015 for identifying and healing links between multigenerational trauma and chronic illness as well as other kinds of chronic symptoms.

Clarifying some of the confusion in my family history has been empowering.

It has helped something deep inside of me settle and integrate.

When you fully know and understand the truth of something, it can stop holding you back. The truth can set you free. It can enable you to understand impulses or hunches that you have had, particular types and timing of traumatic events in your life and in the family line, as well as synchronicities that have occurred.

It can help you embrace your life and face your future with greater courage, set boundaries, or know where patterns may have come from so that they can be emphasized or avoided, minimized or addressed for the future.

During the 2 months that I was actively researching my grandfather’s history, I had an increase in energy to the point where I was sometimes able to go twice as far on some of my daily walks.

The energy didn’t continue, but I see it as a sign of the unwinding that is slowly happening with my nervous system patterns. Uncovering the skeletons in my past turns out to be not as scary as keeping them in the closet.

In placing my family ghosts in my internal map, something is changing. They are becoming allies. I am planting seeds of health.

The discoveries about my grandfather’s life have raised many questions for me, including whether traumatic events in his childhood influenced the development of his RA; whether traumatic events in his mother’s life influenced her decision to commit suicide; and whether my grandfather’s premature and sudden departure from his own family influenced the development of CFS and MCS in my aunts.

I wonder about whether the multigenerational trauma and chronic illness connection influenced my chronic fatigue too, given that I grew up in an intact, non-abusive family.

I’ve written a follow-up post in which I describe research studies looking at the role of childhood trauma in affecting risk for chronic illness.

It is All Hallows’ Eve and to support the relationships that I am forging with my ancestors I want to honor and pray for them, that they may have peace and experience a place of greater ease.

Candles-and-an orange day lily

Have you ever considered the role of early trauma in your or a loved one’s chronic illness? Have you ever experienced shifts, epiphanies or relief on learning about a significant but unknown event in your family lineage? Do you get symptoms on certain dates are did symptoms happen at the same age that a big event happened in one of your relatives’ lives? This might relate to the link between multigenerational trauma and chronic illness. How do you cope or work with the ghosts from your past?

Related Posts

Working with my multigenerational trauma with Family Constellations

The Trauma and Chronic Illness Model: the role of trauma from past generations, early life and more

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

Rheumatoid Awareness Day 2017: Causes include Events during Pregnancy, Birth and Infancy

Risk for Rheumatoid Arthritis: the Role of Trauma in Childhood

You can also learn more about the different types of trauma that affect health in my free downloadable ebook 1.

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How Trauma Shapes Disease AMEs (Adverse Multigenerational Experiences), ME/CFS, Rheumatoid Arthritis (RA/RD), Specific Disease Stories

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Comments

  1. Emily G. Smith says

    October 31, 2014 at 5:50 pm

    This is so moving and persuasive, Veronique! And without that death certificate, you would never have known. So many silly societal taboos make people keep secrets, but as you say, the shock and horror of suicide would make anyone avoid the topic. Your poor grandfather and father and aunts. I can’t imagine being abandoned. It would nag at you every day of your life at some level wondering why.

    Reply
  2. Emily G. Smith says

    October 31, 2014 at 5:54 pm

    the photo of your grandfather is haunting, too. Handsome boy.

    Reply
    • Veronique says

      October 31, 2014 at 6:25 pm

      Getting to meet my grandfather in this way, through the research and the documents and the uncovering of information a step at a time, sometimes waiting for weeks before getting the next piece of information, has felt really good. It helps when it’s not someone who has affected you directly in any painful ways. I find that picture of him and his sister so tender and poignant – and haunting – too.

      Reply
  3. Kate says

    August 1, 2015 at 11:10 am

    Hello. It is such a joy to have found your blog. Your journey so resonates with my own in so many ways. I too am a psychotherapist who suffers from chronic illness and have like you, been searching both within myself and out to feel into the possible causes and triggers. It’s a powerful journey and as painful and isolating as it’s been, it has proven to be an ever deepening path to awakening. As it relates to your post, I’ve become more aware I’m walking in the several different pairs of shoes of my ancestors- learning about epigenetics was incredibly powerful for me. I continue to peel the layers of souls within my cells. I’m very glad to have found you and your blog. Kindly, Kate

    Reply
    • Veronique Mead says

      August 1, 2015 at 12:06 pm

      Hi Kate,
      It sounds like a similar journey indeed. It truly is powerful to begin to link to triggers and to recognize the “shoes of others” we have unwittingly been walking in … It’s also such a huge help to get a context, and to learn of the explanations for things we have wondered about – not only triggers etc, but as you say, how epigenetics helps explain things …

      Wishing you continued discoveries and progress on your journey of awakening your souls within your cells and on your path. Thanks so much for letting me know of your joy in finding this blog – we get to keep journeying and doing the work “together” !

      Reply

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I love hearing from you. I read and review every comment before publishing it to make it visible to everyone. Your stories and insights make the writing and running of my blog so worthwhile. Although your email is required, it is not made public. You can use any name you wish. How do you work with your health? What has helped as you've become an expert in your own right? Does understanding the science of trauma make your journey any easier? Is there anything you need or wish I wrote about more?

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About Me

Hello! I'm Veronique Mead. On my blog I look at how chronic illness may be a natural response to one or more overwhelming experiences of threat. While this includes infections and toxins, I specialize in the role of psychological and physical trauma. Because the research - still overlooked and underestimated by medicine - has knocked my socks off.

 

Symptoms, it is turning out, may not be caused by mistakes our bodies are making but because our nervous systems have gotten stuck in states of fight, flight or freeze. Our bodies are our best friends and risk everything to help us survive. We are designed to recover or at least begin to heal from the effects of those survival strategies. I never knew any of this as a family physician or assistant professor. And it’s not in your head.

 

I've been testing these ideas with my own disabling disease for the past 20 years (I am much improved and get a little better every year). I share the research, challenges, why some things that seem so logical do not work for everyone (or make things worse), as well as my favorite 11 tools. This is so you can explore what might help you stabilize, improve or possibly even begin to reverse underlying drivers of your chronic illness too. For an overview with links to my most important posts, start here.

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#WEGOHealthAwards 2019 Patient Leader Finalist for Best in Show Blog Chronic Illness Trauma Studies Veronique Mead MD, MA

I and we - it feels so much like a WE - were among 6000 nominees for 15 categories of patient leader awards and one of 5 finalists for Best in Show Blog at the #WEGOHealthAwards. Learn more here.

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