On my return from time with my parents for my annual summer visit in the early 2000s I finally connected the dots to realize that my unquenchable thirst and dry mouth were not solely from living at 5000 feet in the arid climate near the Rocky Mountains of Colorado. Eating desserts and vinegary foods, it turned out, was making my mouth dry and making me extra thirsty. Thus began my almost 20 year journey with severe food intolerances that became so limiting I spent 2 years unable to eat practically anything but one kind of meat (boiled, no less).
It wasn’t the food itself or a healthy way of eating in particular that solved my problem, although changing my diet did help me greatly with a wide array of symptoms.
This is about how I tackled and eventually overcame severe food intolerances in November 2018. It’s part of my story that’s been too taboo to expose and that I’ve been unable to share before: how I’ve been healing my complex PTSD and ACREs (adverse childhood relationship experiences) and the enormous, under-appreciated effects these have on long-term health.
This is also part of how I’ve approached my disabling chronic fatigue syndrome (ME/CFS), which is a disease with no known cure, no quick fixes, and no single path of healing that works for everyone (Like everything else on my blog, this post and approach apply to working with any symptom, chronic illness or mental health condition, including depression and anxiety).
Table of Contents
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- Cleaning my Fence is The Metaphor
- 1. Symptoms Level 1: No Carbs
- 2. Symptoms Level 2: Dry Mouth +
- 3. Symptoms Level 3: Worsening Constipation +
- 4. Symptoms Level 4: Not Even Vegetables?!
- 5. Symptom Phase 5: The Rumbling Volcano
- 6. Symptom Phase 6: Taking New Action
- 7. Normalizing Emotional Neglect
- 7. Severe Food Intolerances No Longer
- 8. Speaking Up is Hard
- 9. Breaking Taboos
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As many of you well know, I use trauma perspectives to make sense of my symptoms and see them as linked to a nervous system caught in states of relative freeze, fight and flight. This view has been helping me recover.
Of note, I have tested these views with many approaches over the years, including a special focus on trauma therapies of all kinds. I have not sought medical treatment very often. This is for a number of reasons: 1)I’m a person whose labs were almost always normal and whose body became intolerant to all manner of medications, supplements, probiotics and more along this journey and whose symptoms either weren’t helped or worsened with medical and other treatment. 2) I’m a former family physician who could assess whether I was getting into trouble or needed medical attention as I tested things out. 3) I had a primary care physician and other health care professionals I could consult when needed. 4) I was trying approaches that seemed to have more comprehensive ways of making sense of my symptoms, including acupuncture, ayurveda, chinese and ayurvedic herbs, cransiosacral therapy, homoepathy, Mayan massage, functional medicine, a medical intuitive, and beyond. I took a different path than many might need to take. Many of you, however, will be familiar with the general outline of what I’ve had to do, because this is what you’ve had to do as well, regardless of which chronic disease you may have.
The list of what I ended up having trouble with as my severe food intolerances worsened included the following:
- All Carbs: bread, pasta, cereal, grains, legumes, granola, all desserts, gluten and gluten-free, all sugar +
- Vinegars such as salad dressings & ketchup
- Nightshades (tomatoes, potatoes, eggplant, bell peppers…)
- Ferments (such as sour cream, sauerkraut)
- Eggs (found on testing)
- Mushrooms (found on testing)
- Red Meat
Cleaning my Fence is The Metaphor
I accompany this post with images of our small white picket fence, which serves as a metaphor for the tools I’ve needed for healing. The pictures reveal the underlying trauma-related solutions that eventually helped me overcome my severe food intolerances.
This journey took much (much) longer and much (much) more effort and trial and error than I ever thought it could, although I didn’t even really know if my suspicions that trauma was an underlying driver of symptoms would turn out to be true or useful.
I share this story with some excitement because it might give some of you hope, encouragement and new tools to keep trusting these trauma perspectives too.
1. Symptoms Level 1: No Carbs
My first response to the realization that the occasional slice of cake, apple pie and other desserts was contributing to my symptoms of uncomfortable mouth dryness was to start limiting these foods. Including eating less of my mom’s home-made vinegared “Ketchup” I’d grown up with and that heightened the enjoyment of meals with meat and potatoes. Even though I didn’t consume a great deal of these foods, it was still disappointing. Will-powering my way through this was challenging because I have had a sweet tooth all my life. So at first I simply started to eat desserts less often, such as on weekends or special occasions like birthdays.
Treatment 1: Limiting Certain Foods
This first “treatment approach” was like spraying off my fence with a strong stream of water. I first removed the wire fencing I’d placed on it so that my clematis and climbing rose had somewhere to attach. The strong spray helped remove some of the accumulated dirt with relative ease.
2. Symptoms Level 2: Dry Mouth +
Over the following 10 to 12 years, my symptoms of dryness got worse and began to affect other body systems. I started to realize through trial and error that these foods made some of my other, not clearly related symptoms, worse too:
- Dry mouth, tongue, sinuses and thirst 24 hours a day
- Dry eyes
- Worsening of llfelong dry skin
- Restless legs
- Bloating with an out-of-proportionately-large belly
Dryness. The night after I’d eat something acidic or carby, my sinuses would get stuffy and I’d have trouble breathing with my mouth closed. This interfered with my already poor sleep.
Restless legs. The sensation in my legs of rising, uncomfortable energy that felt like it had nowhere to go could happen at any time of the day. Mostly, though, it woke me up in the middle of the night when I’d eaten acidic foods the day before. The restlessness would persist for a few hours. Cold water didn’t help much. Making sure I took my evening walk often reduced the risk or intensity at least a little. I wasn’t interested in trying to find a medication for treatment as I felt there was an underlying driver that I preferred to address. A meditation practice of being with this experience without moving or reacting to it never worked either. I would manage to stay with it sometimes for more than an hour but the sensation would become too unbearable to stick with.
As a result of the worsening symptoms, I was motivated to limit what I started to call “acidic” foods more seriously while I continued my trauma therapies and multiple, ongoing other approaches.
I therefore restricted an increasingly number of other “acidic foods,” including bread, pasta, and grains, as well as salad dressings and anything that contained vinegar. I had to stop eating fruit for the same reasons.
Treatment 2: LImiting More Foods
Restricting more foods helped with my symptoms. Taking certain foods out of one’s diet is enough for some people to be fully healthy. One friend of mine, for example, stopped eating avocados for a number of years because they caused a reaction. She’s since been able to resume eating them without problems. She had and has also done non trauma-therapy related work that supports her health over the years.
Like using water to spray down my fence, however, I learned that limiting my foods didn’t help remove the underlying problem such as the caked-on grime and the dark spots.
3. Symptoms Level 3: Worsening Constipation +
In the next 3 to 5 years acidic foods began to worsen other growing symptoms that seemed to be linked to my disabling chronic fatigue syndrome (ME/CFS). My symptoms of fatigue had actually started to improve in 2010 and I was walking 30 minutes twice a day, drinking lots of water and no longer bed ridden. But other symptoms were arising that seemed to have a mind or driver of their own:
Interstitial cystitis (IC). At first, a very occasional urinary tract infection resolved with antibiotics (even as these caused yeast infections). I then began to have bouts of bladder pain with tests that were negative for bacteria. I was given a diagnosis of IC. Eating too many acidic foods could now also to trigger these symptoms of IC.
Constipation. I had irregular bowel movements for most of my adult life without concerns or problems. Over time, however, frequency gradually decreased. At my worst around 2014, I spent a year with constipation so severe I had fecal impaction, in which I was unable to have a spontaneous BM despite drinking a great deal of water, using no medications, exercising fairly well for a person with ME/CFS, and eating a healthy diet high in fiber. I suspected my constipation was related to my chronic fatigue syndrome and a body caught in a nervous system state of hibernation and freeze. I will someday write about this as a separate post.
Hemorrhoids. Around 2011, the combination of constipation, a spicy therapeutic ayurvedic diet and herbs, and a single baked potato took me over a new threshold and I developed hemorrhoids that were quite severe for about 3 years (yes, they resolved even as my constipation worsened as they are not entirely linked). On occasion, I had intense pain that limited my movements when they became thrombosed. I learned that all of the foods in the group known as nightshades were now causing me problems, as well as corn, nuts, shellfish and legumes such as red or black beans. Common nightshades include tomatoes, eggplant, bell peppers, potatoes, and many spices, as I just learned while finding a link for this post. Hemorrhoids will also be a topic for a separate post.
Treatment 3: Autoimmune Paleo Diet
The worsening of my symptoms in 2013 caused me a significant amount of physical and psychological stress and worry. Online one day, I found a way of eating called the GAPS Diet (Gut and Psychology Syndrome) that resonated. It was meat and broth based, eliminated all carbs, described leaky gut syndrome as a potential source of many of the symptoms I was experiencing, had a clear plan, including detoxing with baths and juicing, and helped founder Natashia Campbell’s son (and many others since) recover from autism. After 10 years of a gentle but ineffective approach, I got the book, rearranged my cupboards, purchased a 20 gallon stock pot for making broth and a case of large mason jars for storing it, then started the new diet a week later. Because my intolerances were so severe, I couldn’t eat everything on her list, but I could eat the base plan. With all my restrictions, what I could eat turned out to be what is often referred to as the Autoimmune Paleo Diet (AIP).
There’s nothing like the presence of scary, excruciating, life altering symptoms to motivate you to do whatever it takes. I had crossed a new line.
Doing a major dietary change like Autoimmune Paleo was like adding a powerful new tool for cleaning my fence. Putting on rubber gloves, scrubbing with a brush, and digging in more deeply made a big improvement in my symptoms.
4. Symptoms Level 4: Not Even Vegetables?!
After an initial well-recognized adaptation period with some headaches and nausea over the first 30 days, the GAPS diet began to calm everything down. Although my constipation and frequency did not change dramatically, my fecal impaction resolved. The symptoms of IC, which were infrequent, decreased further. My symptoms of dry mouth, eyes and skin improved significantly, and so did my restless legs.
I also lost weight and it felt empowering. I felt better and loved my new slimmer body.
But I was still intolerant of all carbs and vinegars and nightshades.
2.5 years into the GAPS diet, my weight loss progressed and I started to look like someone who is chronically ill. I wasn’t sure it was healthy anymore. Then I started getting restless legs again when I ate the sweeter vegetables such as cabbage.
I wondered if I was reacting to carbs I had never realized existed in green vegetables, or to something else.
To my dismay, my already severe food intolerances were worsening.
I had never been able to increase my foods from the base GAPS diet. And I had been unable to tolerate any of the probiotics she recommended, including tiny doses of home-made sauerkraut or sour cream, which caused such severe increases in dryness and restless legs that it wasn’t worth it.
It was looking like I was going to have to add a slew of vegetables to my already lengthy list of foods I had to avoid.
When I started bloating again with this way of eating, just as it had been for over 2 years, and then feeling full for days on end even when I should have been hungry, I decided I needed to change gears again.
Treatment 4: Zero Carb Way of Eating
This time what caught my attention was one man’s story of recovery from a life-threatening autoimmune liver disease and this woman’s story of weight loss. They were eating Zero Carb (and nearly ZC). I’ve always felt better and had better energy when I eat meat and protein-dense meals. And now I was having symptoms from vegetables.
So I switched to Zero Carb.
ZC is a meat only diet with no plant based foods of any kind (no olive oil, no herbs, no coconut oil, no vegetables etc) and no calorie restrictions. There’s no counting of ketones either, just the recommendation to “eat meat and drink water.” While many are skeptical or worry about this being too severe of a keto diet, or that it might cause problems by limiting certain micro-ingredients, there are studies of entire populations being in optimal health with this way of eating, such as Eskimo populations in Alaska and Icelanders. I found two ZC facebook support groups that were more open-minded, nonjudgemental, informative and spacious regarding the time, process and individual paths needed for healing than I’d ever encountered. Many admins and leaders in the groups had been eating this way for 8, 10 or 50 years. They were in the best health they’d ever been, had normal labs, and had either lost weight as their primary goal or stabilized or reversed type 2 diabetes and other chronic diseases.
I started eating meat for my 3 meals every day. I’d always needed a dense, supper-like meal for breakfast so this was appealing to me and got my day off to a great start.
Previously I’d learned that my symptoms were sensitive to red meat so I excluded this even though it was most Zero Carbers favorite and easiest go-to food. I found salmon expensive and too intense of a flavor to eat very often. Although I loved pork and pork belly on GAPS, I found it uninteresting and dry without vegetables. And I had learned from an acupuncturist and personal experience that boiling was easiest for my system to process and digest.
So I ate boiled chicken three times a day for 2 years. Remarkably, while it was sometimes hard to refrain from cheating, my symptoms continued to motivate me and I was (rarely) bored. I also appreciated the ease that comes with not having to figure out meals each day.
Within the first 30 days I gained some energy. It was the first time any way of eating had ever positively affected my energy levels.
I started having easier, softer BMs. After some time, the frequency occasionally improved too. And I discovered that increasing my fat intake often helped with constipation too.
My mood stabilized and my stress levels went down as all my symptoms improved again. I regained the weight I had lost. My feelings of hunger were satisfied for hours after each meal. My belly stayed larger than normal but I rarely had pain, cramps or bloating anymore. I got to focus on other things with my health, healing and life.
Going Zero Carb made a big difference in my symptoms but it was ultimately still like using the brush: not actually effective in removing the highly visible, problematic dark spots that stained most of the fence. I ended up needing do something different to overcome my severe food intolerances.
5. Symptom Phase 5: The Rumbling Volcano
My physical symptoms stabilized and calmed for 2 years on Zero Carb.
It was my mental will power and something more subtle that started to slip after 4 years of eating in such restricted ways.
I’d actually been incredibly motivated about eating so extremely “clean” because it made such a difference in my health and how I felt.
In the 4 years of eating in these ways I had cheated less than a dozen times. One of those times had been to eat an apple. I’d picked it from the tree I’d planted in my front yard more than a decade earlier. A Cortland apple, like the ones in my grandmother’s orchard. I’d planned to just take a bite, enjoy the flavor and juices without swallowing, and then actually spit it out. Instead, I had munched on and just kept going. It had been the most delicious experience. Another time a few years later was to eat one of the ripe local peaches a friend had given David to bring home. These had been worth the resulting symptoms, even as they were not something I could do on a regular basis.
Although it was a hassle, I had been able to make ZC and GAPS work when I travelled such as to visit family, by cooking my own meals (with my mom’s help at times too) and often sticking simply to chicken. On the occasional restaurant date with David, I’d ordered fish or chicken, or burgers without sides or bun or accompaniments.
But it was the sweets that called to me most. Even though most people I read about lose their sugar cravings, often within 30 days or even less after shifting their diets, mine decreased but never went away (there are suggestions this relates to yeast activity in the body). My sweet tooth stimulated a level of rising frustration from all the containment.
I started to chafe at the bit.
Something in the chafing and containment began to feel familiar.
It felt similar to the experiences I’ve had being limited and contained by disabling fatigue for 20 years.
And despite the efficacy of ZC, I still had all the same severe food intolerances.
Treatment 5: Trauma Therapy
During what would turn out to be the last 6 months of time on Zero Carb, I found myself starting to act out a little. An unconscious process was taking form outside of any decision or my ability to control.
Such as having some of the chicken marsala that I’d made when friends came to visit. And then some of the trifle for dessert.
I’d wake up the next morning feeling like I’d been run over by a truck. But oh my, it was so worth it again.
I couldn’t push it without risking a return to my severe symptoms, so I managed to stay careful and keep a lid on with will power as best I could. Until the next urge would arise, unbidden.
I had occasionally taken time off from my 15+ years of trauma therapy, but after a particularly challenging and eye-opening event in April 2018, I did another series of sessions. In retrospect as I write this post, I realize that event was probably what triggered this new onset of rebellion against my helpful, possibly life-saving, but nonetheless incredibly limiting and containing tools I was using to reel in my symptoms. Even as I kept plugging away at the slow-to-change trauma-related bits and pieces with mindfulness and other practices I used both in and outside of therapy.
Working from a trauma perspective was akin to shifting to a “Magic Eraser” as my new tool for cleaning the fence.
Like working with my health, cleaning this fence has been taking much more effort than I anticipated. But it’s still less than when I first tried it 4 years ago after moving into the condo and finding that the brush and water didn’t work, even with heavy duty Dr. Bronner’s soap that succeeds with every other task I’ve ever tried.
These little white sponge erasers that a friend recommended are working wonders. Rather tiring wonders, but wonders nonetheless. I’m pacing myself just as I have to do on this healing journey, because using this little miracle to wipe off the deep black spots actually takes a great deal of physical pressure and scrubbing. I’ve had to do just a section at a time most days, and then rest for a couple days before doing another.
And that’s okay, ’cause seeing it be effective makes it doable and worthwhile.
6. Symptom Phase 6: Taking New Action
Initiating Events that Helped me get Back to a Regular Way of Eating
In April 2018, David and I had a 4-day visit from my father. It was the first time we’d spent so much time alone together without other family members around since I’d become an adult.
I was shocked to discover that there was barely a relationship or connection between us. He said hello when I picked him up at the bus station, was friendly and in a good mood as he’s always been. He then proceeded to talk for the rest of his visit. There was an occasional question about me, or us, or our life. Then, within a few sentences, it was back to him, his ideas and his recent adventures.
What is important to emphasize here is that the full realization of how this was actually a disconnected relationship came because I experienced David’s reactions. Like me, David is a somatic trauma therapist. He is also a a child and family therapist and works with adults in healing complex PTSD. And what he observed was a father who had made the effort to come a long way to visit but who expressed no interest, caring, nurturing, warmth, support or curiosity towards his daughter. The ways Dad was relating to me evoked strong feelings of protectiveness in David. It also made him so sad and so angry at my father that he found it difficult to not say or do something.
But I wasn’t ready for David to speak out to my Dad.
I did, however, see that David’s feelings came from his love for me.
And it woke me up.
It took me some days to begin to really see what was happening with more differentiated, clear eyes.
What I started to recognize and feel, stemming also from my own training as well as decades of therapy and working to heal old attachment wounds, was that I was taking care of my Dad. That I was doing all the listening, uhuh-ing, appreciating, reflecting, exploring, regulating, question-asking and supporting.
And that it was a one-way street.
I’d known I did this for many years, but had never realized the depth of it nor seen it so starkly. Nor had I recognized the extent to which I had learned to immobilize myself as a way to stop reaching for connection that was not actually available. I had not quite seen the degree to which I held in my emotions, both as a child and in the present. Including my feelings of longing for emotional connection, my fears that real connection would not be there if I tried, the profound grief at the loss and lack, and the anger and frustration when there was no seeming interest in me and who I was.
The result has been a freeze response. A nervous system pattern of survival that has suppressed further efforts and additional “trying” as a way to protect itself from overwhelm.
I now understand this to be an important contribution to the freeze state that gradually spread to encompass my general physiology, evolving into decades of disabling chronic fatigue.
Without the buffer of other family members – and with the added witness of a loving partner who was not familiar with the well-accepted, condoned, normalized ways of interacting in my family system, my caretaking pattern – and my father’s inability to connect emotionally – became highly visible.
Over the days of the visit and the months that followed, I began to recognize the extent to which I’d done this caretaking thing my entire life. Making my Dad (and other family members) more comfortable, easing his unrecognized anxiety, supporting his possible and unrecognized loneliness or need for connection, helping to regulate his unresolved and unrecognized trauma, freeze and complex PTSD, and doing it unconsciously. All so that I might be as comfortable (and able to survive) as possible too.
7. Normalizing Emotional Neglect
The influences of emotional neglect from our adult caregivers is what I refer to as an adverse childhood relationship experience (ACRE). It’s what I suspect is among the most profound and underestimated contributors to risk for chronic illness and other effects of trauma, in our own lives and across generations and cultures: The absence of love and nurturing care, safety and support.
ACREs are important because children typically spend their first 18 years or more in the care of adults. As a result, misattunements, lack or losses of connection, failures of support and repair take place over a period of many years. They come from the people we imprint on and who we are genetically programmed to care about and need the most. The ones who we depend on for our very survival. The ones we are designed to learn from as we develop the capacity to regulate our emotions and physiologies, and learn about connection with.
A lack of emotional connection and support therefore has deep and long-lasting influences on the development of all systems: nervous, immune, respiratory, gastrointestinal, emotional, psychological, cellular, epigenetic, and beyond. These are intrinsic reasons for why it’s not psychological.
Adverse childhood relationship experiences, however, tend to go unrecognized because what we experience in each of our own unique families gets normalized.
Normalizing is an unconscious defense mechanism that enables children to survive difficult and even life-threatening experiences with the adults on whom their lives depend (see SNL Darrell Hammond’s documentary Cracked Up for a gentle, spaciously titrated example of how even severe physical abuse can be normalized and forgotten as part of a child’s mechanism for survival).
To state it another way, emotional neglect is a form of trauma that is among the most invisible of them all because it is the absence of something all children are supposed to experience, rather than presence of something overt.
ACREs also typically become a form of multigenerational trauma. Because these difficult experiences happen to children every day when their parents have unresolved trauma that makes it hard for them to feel, let alone regulate, their own emotions. Because if one has difficulty accessing, feeling and regulating their own deep or difficult feelings, it is difficult to help co-regulate for another, such as for their child.
Treatment 6: Reawakening The Fight Response
During The Visit, feelings of rage begun to bubble up for me.
I debated whether to say anything about this attachment pattern with my Dad (or to let David speak up). But I had noticed this pattern long before in which I did all the listening. Talking to him about it a few years earlier had not changed anything. And this time, it was so much worse.
It hadn’t seemed that big a deal in some ways. So what if I did some extra listening? I wasn’t being abused. My Dad wasn’t intentionally trying to cause me harm or pain. I told myself that he was doing the best he could. What was the big deal? But my symptoms were starting to worsen during or after some of these one-way conversations, including anger and then an “outburst” of hemorrhoids within hours after one of these phone calls. They were speaking for a part of me that was suppressed and had had to hold it all in.
Despite this, I made the decision to keep my thoughts, feelings and words to myself. After years of consciously and unconsciously wishing, hoping and believing that maybe he could or would change, I’d come to accept it more fully for what it was: If change was going to happen, it was going to have to happen in me.
In addition – and I suspect many of you have had this very thought process – it didn’t feel worth the trouble. Why raise a ruckus? Why rock the boat? Why challenge someone about a behavior they don’t see or have never expressed a capacity or willingness to consider, own, or look at?
On top of it all, why risk being perceived as the difficult one? Or as a whiny wimp about something that looked like no big deal?
Besides, I didn’t live with him anymore. I was an adult, with my own life. My survival was no longer dependent on my Dad.
I decided to continue to work through my internalized patterns and threat responses to the best of my ability.
An Aha Moment in Trauma Therapy
So I worked some more on my nice girl, good girl, appeasing girl, quiet girl, frozen-because-it’s-not-possible-to-fight-or-flee-my-way-through-this-behavior-from-my-Dad-on-whom-my-life-once-depended-girl patterns in therapy.
Made room for the rage. Gave it a voice in a safe place. Acknowledged that my adverse childhood relationship experiences (complex PTSD) were stronger and had clearer origins than I’d been able to identify in the past.
I did this too because I love my Dad, who had also given me important gifts in other ways.
Then something shifted in a particular EMDR session in November as my birthday approached.
As I worked with the rage a spontaneous impulse arose.
I felt my anger.
I realized that what I needed was a “fence.”
I needed a boundary.
This boundary wasn’t because I was still trying to change my Dad.
It was about me and what I needed for myself.
It was about Self Care.
It was about what my system needed so I could continue to heal. To not work this from my freeze response but to instead make a clear statement as a form of self protection so that my body and physiology knew that I would take care of it and keep something threatening out.
So that I could lead my own life outside the shadows of freeze.
Treatment 7: An Unexpected Solution of Speaking Up
So I set up a phone conversation with my Dad by email. And appreciated when he was willing to do so.
Anger, clarity and self-respect helped me hold my boundary during the talk that we had. They helped me hold the line when my father had trouble seeing or believing he’d done anything wrong or to deserve what I described as a problematic way of relating to me.
My feelings served a purpose. They helped me not crumble, not lose my belief in myself, and keep coming back to the truth of my experience.
I was engaging my social nervous system, my “Smart” vagus. Using words and clarity to create safety for my system in subtle ways.
7. Severe Food Intolerances No Longer
5 days after my conversation with my Dad, I had a hunkering for Mexican food.
I’d had these desires on occasion over the years with my severe food intolerances but had never followed through because of a deep knowing that my capacity was too low.
This time, something was different.
The lava had started to flow.
It was like reaching for something that might pinch but that probably wouldn’t bite.
David, who’d found it unappealing to eat out much without me, came too.
I ate every last bite of my 3 cheese-filled corn enchiladas in red chilli sauce topped with a dollop of sour cream and sides of refried beans and rice.
At Thanksgiving a few weeks later I had turkey with stuffing and cranberry sauce, veggies, and at least two helpings of apple and pumpkin pie with whipped cream.
When I went to visit my family in December I ate my clean meals in the morning and for lunch, and then had my mom’s donuts and everything else she had on the table for supper. I even got to relish her cinnamon buns, fresh out of the oven.
My symptoms have not completely resolved in the 2 years since setting that boundary but have softened significantly. I now eat everything. I still eat pretty cleanly for many of my meals, still listen to my body, and slow down a bit when I need to. But I eat anything and everything and no longer have severe or scary kick back from my body.
8. Speaking Up is Hard
When I was with my family in December 2018, Dad said he was going to join me for my morning walks. This was new. My response (which took me the night to figure out), came with a condition: “Only if it’s going to be a two-way conversation.”
I got to express what I’d been feeling and how I saw the links to my chronic fatigue during these walks.
My years of work also helped me have some curiosity.
At one point after explaining the importance of emotions I asked him, “Was there room for any emotions when you grew up?” His answer was an immediate and emphatic, “No way!”
When my Dad looked animated at another moment I asked how this was for him, and he said it was an interesting (maybe implying “real”) conversation, different from much of what happens in our family gatherings.
So there were moments of truth and hints of connection and feeling heard.
It was good that we were able to go there.
What ultimately happened from these conversations with my Dad was they helped me begin to shift internally. Even as it didn’t change anything significant that I’m aware of in the way we relate. Neither of us proposed a joint walk or conversation during my 2019 visit, for example. A few recent conversations took me back to freeze for a period after one and deep anger for multiple days after another.
I recognize that I am not perfect either. That I’ve learned – and run – these very same patterns of doing all the talking sometimes with others too. And how it’s taken me a long time and hard work to begin to change this in me. That it’s taken me time to accept this within myself so I can better accept it in Dad.
But I’m still affected by it.
So I need to set more boundaries in order to not abandon myself and so that my symptoms don’t have to run fight or freeze responses instead.
9. Breaking Taboos
After years of internal debate, I am breaking the taboo about speaking of risk factors from my childhood and family. Staying silent isn’t working for me, even as I’m still trying to figure this out because there is no clear way to work with or heal this and no right way either.
One of the great gifts from these experiences with my Dad is that they have given me more clarity on what I consider to be the most invisible and under-appreciated risk factor for chronic illness: Adverse childhood relationship experiencers (ACREs). This is subtle territory and many of us have found ACREs and complex PTSD particularly tricky to understand and challenging to navigate.
I’ve felt some guilt while writing this post. Had some symptom spikes and activation of fear, fight, and freeze. I’ve felt protective of my father, not wanting to hurt him to share my experience. And because I appreciate other things he has done for me and other qualities he has.
I’ve also felt empowered as I’ve worked on what to say. My symptoms have gone up and then softened back down again. And I’ve had David’s support all along the way, which has helped make this difficult process easier. His presence has been a form of repair as I continue to learn what it feels like to have meaningful, reliable, loving connection. This is a huge aspect of how I am healing.
And so, I am shifting my allegiance. Becoming less protective of family and more honoring of myself. More supportive of my continued healing. And giving myself permission to highlight this all-too-easy-to-dismiss impact of emotional neglect. To validating its role as a risk factor for the millions who live with chronic illness, those who love them, and the professionals who want to help.
Speaking of this out loud and not wanting to try anymore has made me sad.
It also feels like progress.
My body feels a lightening of the load.
All is good.
So here it is. I present to you my shiny clean fence. Because I have something precious and tender and important to say. So important, in fact, that it has become my life’s work.
Adverse Multigenerational Experiences (AMEs) in my Family
Chronic Fatigue Syndrome (ME/CFS): A State of Freeze That’s Not in Your Head
11 Tools For Healing using Trauma and Nervous System Perspectives