Laila’s Chronic Lyme Success Story
Words and images copyright Veronique Mead, Chronic Illness Trauma Studies
This is Laila’s Chronic Lyme Story. I call her story a #Chrillog, which stands for “chronic illness weblogs,” in which we look at our journeys through a nervous system and trauma lens. Laila’s Chronic Lyme Story highlights the commonly overlooked yet important role of adverse childhood relationship experiences (ACREs), more commonly known as complex PTSD, and how she’s worked with its effects.
* At the end of the article, you will find Veronique’s commentary on Laila’s story, highlighting the science and important role of adversity in risk for chronic illness.
My name is Laila Solaris. I am a massage therapist and Hakomi Therapy Practitioner. I specialize in working with people with chronic illness. I have been a Lyme disease survivor since 2013. I also have mold allergies, hormone imbalances, Wi-Fi sensitivity and a brain injury.
I Am Happier, Physically Stronger, and More Stable Than Before Getting Sick
I have always had persistent low-grade symptoms and food sensitivities. But, in retrospect, those mood issues and digestive troubles seem like nothing. When my Lyme disease came on, it was sudden, like a ton of bricks. It was triggered by emotional and physical stress, and living in a moldy house. During the first months, I was so fatigued, I could hardly work, and I was in panic mode and depressed at the same time. It was horrible, and there was no one to explain what was going on. Now I am better informed. In fact I feel like I’ve made myself into an expert on many subjects relating to chronic illness.
So you might wonder, am I better now, 8 years later? To an outside eye, my life might not actually look much different. I’m pretty limited in what I can do. (I tell people, “I have been living the Covid lifestyle for years”). But to me, my life feels totally different. I am happier, more grounded, physically stronger, and my spiritual beliefs have become a part of my experience, rather than the “nice mental concepts” they used to be.
My self identity includes three main elements: being an eccentric, an artist, and a spiritual person. I don’t easily fit in with most groups, and I use the term “eccentric”, because I don’t want to imply that there is anything wrong with me, or others. I’m just different from the average person. I also identify as an artist. I feel that I have a right to that title, regardless of whether I’m producing anything tangible. To me, being an artist means applying creativity and experimentation as a way of working things out. I use my creativity to come up with solutions for my symptoms, and I use it in my work with my clients. The third part of my identity, spirituality, is a little harder to describe. But, basically, it’s a force I feel guiding me through my illness, or, as I call it, my sacred journey. I feel loved and cared for, even though I go through some hellish periods of time. This journey has made me a wiser, more loving person than I used to be.
My Health Symptoms
In terms of my illnesses, I have had mood, digestive, and temperature regulation issues all my life. But in 2013 my symptoms increased and became much more severe. My main issues include anxiety and depression, hormone issues, extreme sensitivity to cold, joint pain and instability, immune function issues (overreacts to benign things like gluten and grains, and under-reacts to Lyme bacteria, parasites, flu viruses etc.), fatigue, brain fog, and poor left brain function because of a brain injury (however, my right brain function has improved).
As far as what has helped me with my illness… Well, I could fill a couple pages with good protocols that helped other people but did not end up helping me. To list a few that did not help me: antibiotics, herbal combinations like Biocidin and Byron White formulas, colloidal silver, ozone treatments, hyperbaric oxygen, Pekana homeopathic protocol, and high dose liposomal vitamin C. I have experimented with supporting almost every part of my HPA system, including different thyroid, adrenal, and sex hormone prescriptions, and herbs.
I currently take a thyroid prescription in the highest amount possible and creams for adrenal and progesterone support. I have had issues with depression on and off, throughout my life, and I have tried most of the prescriptions out there. At present, I am taking Wellbutrin.
How I’m Doing Now
Compared to how I was in 2013, I am 150% more stable. Meaning I am more stable than I was, even before getting sick.
I used to freak out about what I couldn’t do compared to other people, and I used to get much more upset when misfortune happened.
Now, I feel like a wise old woman who has survived a war, and I can stay grounded and in contact with reality when life doesn’t go my way.
My nervous system still overreacts, but I don’t mistake my triggers for what is actually happening. That is a big deal, and I have worked hard to gain that awareness. By lessening the amount of time I spend in a triggered state, my health has gotten better.
I’m still pretty limited in where I can go, because my temperature regulation is still terrible. I’m cold all the time, and I often experience rounds of sweats and chills that worsen if I can’t dry off. If I can control my environment, I have a much better chance of feeling ok. That is huge, because I have gone through past years without feeling ok much at all. Controlling my environment means having enough heat, avoiding drafts, changing my clothes or drying my hair when I need to, and having some peacefulness or beauty in the space.
These days, I stay within my controlled bubble at home. I try to find new places where I can create a bubble (like at my friends’ homes or my office), and I go out shopping or take short walks when I can. I’m pretty happy a lot of the time, and I can get excited and feel passionate about something fairly often. My physical strength has gotten a lot better although I still don’t have much stamina. All of these changes have been gained by dogged persistence.
Alcohol and Sugar
My grandmother’s family came from Finland to Southern Maine, in the mid 1800s. From what I know, they were farmers, curious to see what they could make of themselves in the U.S. My great grandfather settled down in South Paris, Maine, where there was a small Finnish community. I could not find any history of illness in their family, but, by gathering stories over the years, I have come to believe that there has been a strong tendency towards alcoholism. My grandmother told me that no one was allowed to keep alcohol in their house. She said that there were just a few times that she saw her father when he was drunk, but apparently he became a scary person when he did. Later, two of her sisters became alcoholics. My grandmother seemed to think that the urge to drink had to be prevented at all times.
I grew up with my grandmother, and we never had alcohol in our home. The topic was never discussed, it was just a fact. I never got the feeling that my grandmother wanted to drink, but, rather, that the idea of alcohol scared her. I think my grandfather was happy to support her need to feel safe.
I believe that my grandmother, mother and I inherited that addictive tendency. But, since alcohol wasn’t in the picture, we turned to carbohydrates and sugar. We all had to actively manage those cravings, and we rarely had sweets in the house. When we did, they were demolished quickly. My poor grandfather, who had no addictive tendencies, never got a chance to have seconds of any dessert. In my 20s most of my diet was pastries, bread, and dried fruit. I got a raging case of candida by my late 20s. Now, I can’t eat much sugar, or grains of any kind.
Depression and Overwhelmed Nervous Systems
My mother, grandmother and I also share genetics for depression, hypothyroidism, and easily overwhelmed nervous systems. I don’t know what caused this. My grandmother was a very happy person, but she maintained her happiness by an airtight rationalization system. She created her own explanations for why her environment was the way that it was. Granted, her views and actions were always meant to be kind, mostly were. But if she encountered any negative situation, she made up her own explanation for it, and she got very upset if her explanation was questioned. When she fell down stairs and broke her hip at age 83, the impact muddled her brain. She was never really happy after that. I think that part of her problem was that she couldn’t manufacture her own reality anymore. It made me think that she might have been fighting off depression all her life.
My grandfather’s ancestors have been in the same area of Massachusetts since 1680. They seemed to be stable, hard working people that went through their lives without drama or adventure, marrying and working locally, and living to their 80s or 90s. My grandfather was very healthy and physically strong, until he died of a stroke, suddenly, at age 75. He was quiet and unemotional, measured in his actions, and fair-minded in his beliefs. He had been a stern father, but he became soft hearted by the time I was born. I loved him, but I couldn’t imagine his thought process, or understand his behavior the way that I could with my grandmother and mother.
Using a trauma framework has been absolutely necessary for my healing – even though my childhood was very predictable and safe.
I lived with my mother and her parents in a rural town in Massachusetts. I never knew my father.
My mother’s pregnancy with me was a turning point in her life. She had a perfect storm of hypothyroid, and anxiety, and failures in her career and marriage. She never recovered. The mother I knew was crippled by a deep sense of shame. She was painfully shy in public, spoke very little, and rarely smiled or laughed.
I do not know much about what happened between my father and my mother, except that she was dating my father when he was getting his doctorate at Yale, and I was an unplanned pregnancy.
Asking my mother to tell me more about it just makes her flustered and defensive. If I push her for answers, she goes into a panic state that is awful to witness, and I still don’t get an answer. My guess, based on scraps of information from my aunt, is that my mother was in love with my father, but he was already in love with another woman, at the time my mother accidentally got pregnant. I doubt that anything terrible happened, but I am sure that it was humiliating for my sensitive mother. It must have been crushing, to have put her hopes on a future husband, and instead, to find herself through a pregnancy, alone. My mother insists that my father never did anything wrong. But she refused to let me have contact with him, probably because of her own sense of defeat and shame. My father married that other woman, and still is married to her today.
I did manage to meet my father once, but it took some effort on my part. When I got old enough to search for his address, I tried writing to him several times, without results. Finally I met a relative, my cousin (his niece) who mildly pressured him into meeting me. But, unexpectedly his wife came with him to our meeting, and basically prevented my father from having a conversation with me. I felt that my father really wanted to talk to me, but that his wife felt threatened by me. They gave me a check for $10,000, and left. My impression was that my father was a kind man, a bit like an absent-minded professor, who had the details of his life organized by a domineering woman (he actually was a professor of mathematics).
I blame my father for his weakness, but not for being intentionally cruel. I have written to him a few times since then, with little response. What they have done is give me more money. Each time I received money, I felt shocked, and confused. I felt “bought off”, like the money was meant to substitute for me getting to know my father. But, of course, it was great too, because I really needed the money. The whole story about my father leaves me a little sick to my stomach. I am sure that he cared for me, but his weakness and inability to stand up for me seemed irresponsible, and his wife’s outright suspicion of me was ridiculous. It’s so far beyond what I would do, it’s hard to comprehend.
What really went on during the time of my conception, I may never know, but I do know some of the effects it had on my mother. I know that she felt like a total failure, and that she fell under a sway of a torrent of self-blame.
So, in the 9 months that my mother was pregnant with me, I was gestating in a soup of the biochemicals of failure. When I picture my tiny body being formed, I see myself wired into a very anxious nervous system, with my cells multiplying in an environment of constant self-blame. This, more than anything else, I believe, set me on the path to having health and mood issues.
I don’t want to paint the picture that my mother held me responsible for her misfortunes. My mother never blamed me, or anyone else for her sadness. She committed herself to doing the best she could to give me a different life than her own, and I never doubted her love for a second. She gave me everything that was in her power to give, without a moment’s hesitation.
But, she did not have much intimate nurturing in her. Nor did she have much conversation. In fact, my mother neglected me emotionally. I became aware of her sadness at an early age, and I wanted to take away her sorrows. It was tough to watch her live with guilt and shame for no good reason. To make matters worse, I could tell that my grandparents were disappointed with my mother. This was rarely spoken out loud, but it was clear in the way they talked to her.
My grandparents were kind and sweet to me, and yet they seemed to be blind to my mother’s good qualities. They had this double standard, which gave love to me, and judgment to my mom. I certainly was glad to have my grandparents give me so much love, and yet it made me angry to see the way they treated my mom. My grandparents were liberal thinkers, and they just assumed that my mother, being the firstborn, would excel at some career.
My mother was a very smart and capable person. She went to college and pursued careers first in sociology, and then interior design. But she was not able to deal with the competitive working world. She couldn’t make a start with either degree. Then she became pregnant with me, and, with no husband to help her, had to return home. My grandparents communicated their disappointment with my mother by avoiding her. My mother, in turn, avoided them, even more carefully. They lived in the house like satellites, revolving around the same space, but rarely engaging. I was the only one who was in contact with all three of them.
They also had their different territories, Mom stayed in her bedroom, and Grammy and Grampa stayed in the living room. My territory was the dining room, which also had a couch and tv and stereo. I was alone a lot of the time; I played by myself, read books, drew pictures, danced to music, and took walks outside. I wasn’t unhappy being with myself, but I really longed for a sibling, or a friend nearby (we were so far out in the country that there weren’t other kids in walking distance), or even a pet.
My ACE Score (adverse childhood experiences) is 4.
The Parameters of What is Traumatic
I have always been aware that my difficulties never added up to Trauma with a capital T. And yet, when I allowed myself to expand the parameters of what I considered traumatic, my issues and symptoms began to make more sense.
Now, for another type of child, my upbringing might have been just fine. But, for me, it was traumatic. I think that I was born with more emotional intelligence than any of my parents, and a much stronger need for intimacy and human contact. I am also mildly intuitive. I could feel and sympathize with the emotions my parents experienced, and I wanted to help them. But when I tried to help, they got annoyed and defensive.
It was frustrating to see the unspoken discord in our family, to understand why it was happening, but to be powerless to help it. I also felt disappointed and hurt that I had this ability (to be emotionally aware), but no one valued it. I think if any one of them had turned to me and said just once, “Wow you can really see into this situation. You would be really good at helping people.” that would have given me tons more self-confidence.
As it was, I tended to go back and forth between valuing my emotional intelligence and totally dismissing it.
Another thing happened, the more I understood my parents’ problems in relating to each other, the more I realized that adults could be as silly and irresponsible as children. That made me sad, and disappointed. I think that was why I chose to spend so much time with myself, rather than cling onto them. I had the same reaction in response to my father. I liked him, but I was disgusted at the cold treatment that I received from him and his wife. That disappointment was big, and it set off a pattern of tending to go off and do things my own way.
This tendency was a smart reaction at the time, and has had its benefits later in life. It kept me from blindly aligning with any group or belief system. And it has helped me to get the confidence to take charge of my own health in the present. But, it has also held me back from trusting some people and joining in some groups that might have been fun, or helpful.
Another strong influence from my childhood is the feeling of anger that no one in my family stretched out of their comfort zone to help me feel more loved. My basic needs were attended to, and I was treated kindly, but no one looked at the big picture of my life and stood up for me. I feel very angry at both sides of my family for that.
When I first got sick in 2013, I was going from doctor to doctor, without getting any real help. There were points when my mental health was really in a bad place, and I got a lot of sympathy, but no one did anything but shrug their shoulders when I kept getting worse. I had a similar feeling that I got from my family, that no one was stepping out of their comfort zone to help me. That was awful. That doubled the stress of what I was already experiencing. I know that sense of mild abandonment has influenced my illness. But, it has also led to me becoming a therapist; I want to be that person to step up when someone is in difficulty. I want to find some missing pieces that other people aren’t doing.
Not Getting the Love
As far as adverse events, the hardest thing for me was not getting as much love as I needed.
Now, part of me feels silly even saying that, because compared to the trauma that a lot of other people have gone through, that sounds like nothing. But for me it happened to be a very big deal. I really needed to be surrounded by a tight family group or community. I really needed people near me that said loving things out loud, kissed me on the cheek, and gave me hugs. I do not know why I was born this way because I do not see examples of outward physical and emotional affection in any members of my family. But, I was always this way.
Now, I didn’t recognize this need until recently, it’s only in the last 20 years that I have been able to put a name to that longing. Because of all my training and practice in psychology, I can see that I ached for love, almost all the time. But not just any sort of love would do. I needed love from soft-hearted people who were emotionally intelligent like myself. I recognized that my family couldn’t do it. And, now, I recognize that actually few people can. But, I never doubted that there were loving people out there.
All this is still true today. I still have a longing for love. And also, as much as I want love, I would rather be alone then be close to people that aren’t genuinely kind and wise. I know that this has left a big hole in my life, that is rarely filled “enough”. This longing has been a big contributor to my illness. I am sure of this, even though I can’t pinpoint the connection.
I wanted to write my story for you to show others that it is possible to experience trauma, even if your family life appeared calm and normal.
I think some people who had childhoods similar to mine, without obvious violence or neglect, might miss the effects of subtle, hidden, low key trauma. It was a really big deal, for me.
Other than not getting enough love, my biggest stress has been money. I have had a difficult time supporting myself, throughout my whole life. No surprise there, huh? Just like my mother, I seemed to lack the know-how to push my career past a certain point, into enough success to be safe, financially. My mother solved her financial issues by doing secretarial work. But I can’t deal with office jobs. I end up feeling like a caged animal. Frankly, I never related to the concept of a “job”. I have always done work that fulfilled basic human needs, like teaching children or soothing someone’s back pain. Both jobs I have now, as counselor and therapist, they make me feel good because I’m helping people through their pain. It’s something that needs doing, and I love doing it. There is a dreamer in me that thinks I should just magically be given housing and food in return for fulfilling necessary tasks.
The year before I got sick, I decided to grit my teeth and push myself to work harder, until I got financially stable. It felt wrong to do that to my body, but I didn’t see an alternative. And then, BOOM, I was hit with extreme fatigue, and suddenly I wasn’t able to go to work at all.
It was terribly scary when it happened. I feel exhausted now, just thinking about it. I have tried so hard to resolve this issue… it is definitely a subject I feel powerless to change. Not that I think that I will always have a negative outcome, but I have given up expecting to control the outcome. I know I can’t push my body, but I don’t feel right working as little as I do.
Spirituality helps me to deal with this issue. I try to trust that I have been created the way I am for a purpose, and that I will be led to the right situation when it’s time. Sometimes I do trust in my belief. But sometimes I beat myself up for not being able to do more with my life. For the time being, I have created a way of doing work I love to do, and I have people I can rely on for financial support. That support has been a godsend, it has truly saved my life, and I’m tremendously grateful. But it has also brought its difficulties.
I have had to accept consequences, like living in other people’s houses for years, without any space to call my own, or accepting offers of free help that sometimes come with expectations attached. Without having rooms of my own, I sometimes felt scattered and it was hard to organize my thoughts and plans. There were other people that offered treatments, or office space for free, but sometimes people expected me to heal fast from their techniques, or align with their beliefs. Other people offered things in moments of generosity, and then realized it wasn’t realistic, but had a hard time telling me. It has been uncomfortable at times.
But, of course, I’m also tremendously grateful, and I have been able to keep working, at least a little bit, through every year of my illness. That has been critically important for my sense of self.
Lastly, my mother has been my biggest financial supporter. I have two different reactions to her support. I feel sad because I had always hoped to grow up and help support my mother, so she could live a better life. It’s uncomfortable to know that she is doing without things to save money for me. But, on the other hand, I feel loved that she is so willing to help me as much as she can. It helps, that Mom tells me it makes her happy, to save for me. But, I really hope I can do something more for her, someday.
I have found solutions from a combination of rigorous personal research, and the best of advice from expert doctors and healers. I follow several different diets, none of them rigidly. I try to choose foods that are low histamine, low-lectin, low oxalate and low sugar. I don’t try to be strict about anything, because that bums me out. And when I refrain from eating something, I try to replace it with some other kind of treat.
I got my first bit of help from doing the low oxalate diet in 2013. That got me out of a low point. Since then, I have studied nutrition from many different healing traditions. I have also kept up with new findings from my health gurus, in order to know more about foods and their benefits and possible triggers. So, when I’m having a persistent symptom, I look back on what I have been eating, for foods that might have caused it. I cut out foods with a hopeful attitude – I try to associate it with avoiding discomfort. I don’t tell myself ‘I SHOULD eat this way,” because then I get resentful.
I treat my Lyme disease and co-infections with a Rife machine. That means I’m using what is called frequency medicine. I actually use a number of healing machines and devices. The reason for this is that I tend to get inflammatory reactions from most herbs and remedies and antibiotics. I like using devices because they don’t have side effects for me. Now, of course, I do have herxheimer reactions, that’s when the body reacts to dead bacteria killed by your treatment and you get the same symptoms all over again.
The herxheimer effect seems to be an unavoidable part of getting healthy from Lyme. But, at least with machines, I know that if I’m getting bad symptoms, it’s because something positive is happening, and not just an allergic reaction to a substance. By using the rife machine, I can also pinpoint how much killing I can handle in one treatment, without it backfiring and overwhelming me.
Besides the rife machine, I have an infrared sauna and an ionic foot bath.
These are great detox methods for me. I also take binders, such as charcoal, bentonite clay or zeolite each night; these binders help to absorb the toxins that can cause herxheimer reactions. Part of my problem is that my detox organs (spleen, liver and kidneys) are not that strong. So, I have learned to alternate using the sauna, my ionic footbath, and taking detox baths using salt or bentonite clay.
Doing these detox methods makes a big difference for me. I feel more relaxed and less inflamed afterwards. If I don’t do these detox treatments, I feel much worse.
I also have a heart rate variability monitor, that helps by giving me biofeedback to help my body train itself to heal. I have a PEMF device that I use on my joints to help them reduce inflammation when they get out of whack. And I have a nerve stimulation device that makes my neuropathy go away (which is why I forgot to mention it above).
Where I Live for Mold and Wifi
As far as healing from mold and Wifi, there is really nothing I have been able to do so far but avoid it. San Francisco, where I was living, is full of both. It is a very damp environment, and I found mold in my home, my office, and most of my friend’s houses. And, of course, San Francisco is a techno-based city, so the density of Wifi is intense. I moved to a town near Palm Springs, CA, and my body really likes the change. My brain function has improved dramatically, although other symptoms are slower to heal. It would be better if I could stay here all the time, but I have to go back to San Francisco to see my favorite clients, and my partner and friends. I need to stay in contact with them, until I build up clients and friends here in the desert.
My doctor tells me that once I can stay full time in the desert, a lot of my food and herb sensitivities will go away. I may be able to take some of the herbs and Lyme treatments that bothered me in the past. For now, I am thrilled to have my brain fog gone, and to have better word recall, focus and organization!
Exercise also really helps. If I’m not working, I do at least 20 minutes each day. I’m very careful not to do much stretching or jumping because my joints get out whack. I like to do Pilates and African dancing (mostly in place). Exercise gives me joy, and it really helps curb inflammation.
Energy Healing and Spiritual Practices
Another thing that helps is energy healing, and spiritual practices. Some of this I can do myself, and I also go to a couple energy healers. Energy healing can be tremendously beneficial for my body, and mind.
Somatic Trauma Therapy
And, lastly, the type of counseling I do, somatic based therapy, has been really helpful. It helps me because it allows me to work on my issues in present time, while I am experiencing the feelings, rather than analyzing my problems with my mind. It also allows me to use tools that have always helped me in the past, like drawing and singing and movement.
I Never Set Out To Do “Woo-Woo”
By the way, I never set out to be so woo-woo. I tried everything available from traditional medicine first. And I kept trying it, for years. The choices I have made now are based on what worked and what didn’t work, not because I had a preconceived bias towards alternative treatments. These esoteric healing options are the ones I use, simply because they have given me the most help.
Now, if I’m going to talk about childhood resources, I will have to mention my parents again. Because my parents were also part of what made my life good. My mother never belittled my symptoms, or emotions, she always took me seriously. She tried very hard to give me a different, more open minded and healthy upbringing. Mom also introduced me to many forms of art, visual art, movies, theater and dance. She wanted to show me a variety of ways of viewing the world, to learn about different cultures, and to get a deeper sense of history. That was her way of introducing me to wider possibilities for my future.
My grandmother was the fun one in the household. Grammy was talented in a dozen different skills, and she taught me that creativity could be a form of entertainment, as well as a means to making useful things. My grandfather showed me love of nature, as he took me on long rides in his tractor. Grampa was happy to have me near him, whatever he was doing. His quiet, stable presence was a great comfort to me.
Nature was a resource too. We had 30 acres, and I could walk for miles through beautiful woodlands. I was also blessed with many wonderful teachers, in school, or workshops, or the theatre, who befriended me and helped me grow up. This was really important, because I always knew that there were paths to making a fun, creative life – and these people gave me the training and support to start doing that.
I made friends with many of my teachers, and I got the feedback from them that I had always been longing for. They were able to name the things that I knew were true about myself. And I had great friends, especially through the theatre, who were not afraid of the intense emotions I often had. I found these friends much more satisfying than my school friends.
As an adult, my resources, again, are my friends, my partner, and my teachers. I have a small group of friends that offer me an enormous amount of wisdom and love. Most of them have some relationship to illness. They are incredible people, all of them. My partner has loyally stayed by my side through the tumultuous experiences of the last 8 years. He has brought much needed optimism and humor to my life. That has been lifesaving, and it has really changed me.
The ability to find humor in my experiences has been one of the most powerful resources I have.
Lastly, I can’t overstate the importance of the amazing spiritual teachers I have met. They introduced me to the idea that my years with this illness have been a sacred journey. I can’t claim to believe this all the time, and yet, when I compare my former self to the person I am now… well, I’m certainly different. There is so much more depth to me now.
My teachers taught me that people who go through life threatening circumstances have a special knowledge. In many ancient cultures, they explained, people with illness were considered sacred, and those that survived would go on to become shamans and healers. I can understand why. I feel like I have 10 times more love to offer people than ever before.
You know, the most painful question for many people with illness is do I matter anymore?
We are all aching to know that what we are going through has some meaning. I like to imagine how everyone with an illness would feel if we had a place of value in our society. That last sentence wraps up what I want to keep on doing with my life. I want to help people, myself included, feel valued again, and to have a purpose. At the very least, we can use what we know to help each other.
Thank you, so much, Veronique, for doing your part, to help our community.
love is a place
& through this place of
(with brightness of peace)
yes is a world
& in this world of
E E Cummings
- Laila’s Chronic Lyme story highlights the very real and overlooked fact that even a family system that looks “calm” or “normal” from the outside can involve extended exposure to important risk factors for chronic illness and other chronic conditions.
- Laila’s story is an example of the many facets of healing, such as how much we can heal emotionally, psychologically, spiritually and in our sense of connection to self and other, even when we may still have physical symptoms, and of how much better and more empowered we can feel, and how many tools can support our journeys.
- Adverse childhood experiences (ACEs), including emotional neglect like Laila experienced, are well-documented risk factors for chronic physical as well as emotional, behavioral and other symptoms. Psychological and physical trauma both influence the nervous, immune and other organ systems and these effects are biological (not in your head).
- Depression is one of the most common and well-recognized effects of trauma, and greater severity and disability from Chronic Lyme was associated with more experiences of stress and trauma in childhood and adulthood in a 1998 study. The study was conducted before the ACEs research and as a result, effects were still posited to be “psychological.”
- Infections are a common trigger for the onset of chronic illnesses of all kinds. Dr. Robert Naviaux of UC San Diego presents the cell danger response (CDR) theory to explain how infections may be one of many exposures to threat that can lead to or precipitate the onset of chronic, complex conditions.
- Trauma and cell danger response theory explain why tools such as Laila’s can be helpful for the healing journey even when medical professionals believe there is nothing that can be done beyond medical treatment or symptom management.
- Laila’s primary risk factors involve a paucity of nurturing love and support. I think of these as invisible ACEs or “adverse childhood relationship experiences (ACREs).” While Laila suggests that her own need for love may be more than others’, the parent-child bond is a core, basic human need that we all have. Early contact and loving relationships are “psychobiological regulators” that shape and support a child’s developing nervous system, immune, respiratory, gastrointestinal, emotional and other systems. Relational experiences therefore have potentially lifelong consequences that our society and medical care overlook and do not adequately support.
- Children are perceptive and are aware of unresolved dynamics and discord in their families, as Laila was. It can be traumatic to live in such an environment and feelings of “powerlessness” (as Laila felt “powerless to help”) are a key component of trauma.
- Laila’s Chronic Lyme Story identifies how risk for chronic conditions can arise after a specific triggering event. It is increasingly understood in trauma science that this event acts like a “last straw” and follows a series of cumulative exposures to difficult experiences in the face of too little support.
- Being unwanted by at least one parent is an adverse babyhood experience (ABE). The potential impacts of having an unplanned baby are vastly underestimated and can have multiple, intertwined multigenerational influences – such as in the mother’s, father’s and grandparents’ lives. These include effects on financial stability, relationships, self-worth, capacity to bond, career and more. Negative effects in caregivers’ lives can have impacts on an unplanned child’s long-term health, financial stability, career, relationships and more.
- Not all unplanned children are unwanted. This very early adverse event, however, did have a cascade of negative effects on Laila, her health, and her life.
- Laila’s experiences offer examples of the many tools that can help support our journeys and how individual and unique these tools can be.
- Laila’s healing journey speaks to the courage, creative thinking and perseverance that is so often needed with chronic illnesses and complex conditions. Even when physical recovery is gradual or incomplete, such journeys can be life-affirming for the discoveries and experiences of greater happiness, strength, stability, self-love and empowerment that come with the deep work of personal healing.
The trauma and nervous system perspective is the most powerful lens I’ve found for making sense of chronic illness in 30 years. It explains why symptoms are not in our heads, not our fault, and why the onset of our diseases can get triggered by different things – infections, loss of a loved, accidents, surgery, stress and more.
I was a family doctor and assistant professor when I left medicine because I felt I was causing harm. I needed more insights and better tools.
When I retrained as a somatic therapist I discovered research I’d never learned in medical school. I share the science and my own journey of recovery from my own chronic illness on my website Chronic Illness Trauma Studies.