How I Healed from Everything
surviving syndromes and autoimmune diseases (so far)
What helped me heal? Talking with my body. Taking my own suffering seriously. Listening to my body parts, especially the organs that were hurting. And offering imaginative, creative support.
I could talk about Internal Family Systems (IFS) and how that worked so well for me, I had to learn how to provide that creative support for clients.
Or I can take a somatic/nervous system approach and talk about how we get dysregulated, and how we learn we are living with trauma, even if we have no memory of it.
Here is a bit of both. After spending about ten years being horribly sick, I came out of a 20 day hospital stay (in 2014), weighing 87 pounds, weaning off steroids, and trying to get my health back. I changed my life. I slowed way down, and I started to listen to my body in a new way. I stopped being afraid of what my body might say. Or maybe I was still afraid, but ignoring my body's desperate attempts to communicate wasn't helping. So I turned my attention toward my body.
I began to look at my life through a lens of: what is my body trying to tell me? Why am I so sensitive? Why do I seem to need so much more care, rest, sleep, gentleness, attention, and kindness than everyone else???????
Autoimmune diseases are now known to happen more often to so-called people pleasers, those of us who can't say no. And I definitely have a very hard time saying no. Growing up I wasn't allowed to say no, so learning to say no was really hard once I found out I should learn to say it.
Truth: I still have the people-pleasing inclination, and saying no is still hard, but I do it. I have done it. I will do it again. And I will live through it.
I used to feel as if I'd die if I said no. Or I'd worry that the person I might say no to will either kill me or die. I'm a person with a history of trauma. If you relate, so are you, whether you know your trauma or not.
What if you are unaware of your own trauma history? What if you don't even have a trauma history?
If you're reading this in one of the 10 countries that Substack tells me you're in (all 1st World, Western Civilizations), chances are you were raised in a culture that did not value or support your mother when she carried you, or after she gave birth.
Chances are, that lack of support, and the stress of Western Civilization on all its people, led to some early (potentially in vitro) probably pre-verbal trauma, that, because of the stage of development you were in when it happened, is generally referred to as attachment trauma.
Example: my mother smoked 2 packs of cigarettes a day, probably as a result of her own early attachment trauma. I have had a lot of stomach problems from early on. Before being diagnosed with actual disease, I did a lot of bracing (and still do when stressed). Probably because, to be nourished in the womb, I also had to take in poisons, including nicotine, my nervous system is wired to act as if I'm a Maserati with a busted choke. I have spent years learning to lower my rpms. Therapists (many) have told me that my days are like other people's weeks. I am driven.
I had a Part that carried a core belief that said, "if I want to do it, I'll have to do it myself, alone. I am and always will be essentially alone." These are trauma thoughts from early attachment and development from way before I could speak. These thoughts arise from circumstances where the baby-me had so many unmet needs, I formed the belief that my needs don't matter. The body disagrees. Sometimes vehemently.
So if you're trying to manage/raise a baby Maserati, you're gonna be a stressed mom. Especially if you have no idea how to regulate your own system (who does?) and all babies require regulation. Moms need support.
Babies do not have the development to self-regulate. It's taught in the first few months of life as the vagus nerve develops (this is science-y, but it's not hard to imagine). The vagus nerve is how we socialize and attach to others. It tells us how we feel internally. (Remember we have many more senses than the 5 that Western Civ insists are the only ones. We live under a system that discounts our internal experience, and yet these internal senses are important, especially for healing.)
As the vagus nerve powers up (through co-regulation with mom) we learn to self-soothe and calm ourselves. But when we're born, and for at least the first 6 months of our lives, we require co-regulation (calming) by others.
We are taught to regulate ourselves. If our main caregiver isn't calm, we will adjust to their nervous state and learn to regulate them. (We become enablers.) This is how mirror neurons work. It's a life-saving part of the human system.
If your mom - not her fault (let's not start blaming here) - wasn't able to help you regulate, you learned something else. So if you freaked out, as babies do, for any reason, and your mom wasn't able to bring her own calm self to calm you, you used your personal emergency break to stop yourself from exploding. You went into a freeze state aka overwhelm aka numbing/dissociation aka a dorsal state.
If this happened a lot, you maybe developed a low tolerance for stress because your system learned to be safe by shutting down, so you might shut down easily. Or you learned a high tolerance for stress, and you toggle between high stress states that might feel exciting to crashing with your coping mechanism(s) of choice. This isn't your fault. This is human biology. Please let go of the blame.
If you live in overwhelm or a cycle of dysregulation long enough or intensely enough, you are (like I was) at higher risk for autoimmune diseases and syndromes. (These are what I'm in remission from: migraines, endometriosis, adenomyosis, ulcerative colitis, celiac disease, fibromyalgia and chronic fatigue.) I had to figure out why on my own.
Doctors will treat disease, but healing is rarely part of that. Yes, I figured it out and healed, so it's not impossible. But I don't say that to blame anyone else for not doing the same. Healing is its own rough road and particular to each individual.
The ACE Study says Adverse Childhood Experiences put you at risk for illness, diseases and syndromes. (Yes, I have a high ACE score - get yours here.)
But ACE scores limit you to known stressful experiences. Many people with serious illness, especially autoimmune diseases like Lupus, MS, and Crohn's, develop these from nervous system dysregulation caused by early attachment trauma.
How do you know if this is you? Does any of this resonate? Are you managing symptoms, exhaustion, discomfort, anxiety, or overwhelm? Are you too much for people? Or not enough? Do you have trouble being present in the world? Often what we think of as personality is really biology responding to how we developed while enduring early trauma.
What can you do? Learn to regulate your nervous system. There are tons of people teaching this and many ways to learn it. Whether you start with breathwork, bodywork, yoga nidra or meditation, the important thing is to find what you are attracted to, and move toward it.
Trust yourself to know. If you have difficulty with self-trust -- this is often the case when there is trauma -- you'll have to learn to rebuild this muscle. Start small. Make a daily promise to yourself. Then keep it.
Parts work - creatively visualizing your parts and healing them - aka Internal Family Systems, was a huge part of my healing. I teach both of these things (somatic work and IFS), privately and in groups.
Writing Prompt:
Making New Myths - LIST some of the things you take for granted. LIST core beliefs you hold. What might you question? What might you allow yourself to look at in a new way? What don’t we ever question? What is just the way things are? What have you been told to leave alone and never question? How can you question it?
Invent a new myth from this. Imagine the reasons for something being done, something perhaps you disagree with. If mythologizing is a way to understand the world - why the sky is blue, the grass is green - then what happens if we make a myth out of a mistake? Can we make that mistake bearable this way?
WRITE without stopping. Make a mythological fairy tale to show via action how something became unquestionable or “true.” Allow objects or organs or animals to be characters. Allow moods to change the weather, or weather to change the mood of the characters. Allow everything to affect everything.
Get super-sensory and unleash all the impossibles, monsters, fairies, goddesses, demons. Let big be small and small be big. Turn the world upside down with touch and taste and smell and sound and sights that trigger action. Let your characters change their states and transform.
Let yourself write strangely for a timed writing session. Instead of writing from ideas, see what you discover.
all artwork by Scott Sherman at ScottShermanStudio on instagram
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Brave Space Schedule:
For the week of 6/3 - 6/7/24 Monday 12pm ET Brave Space Tuesday 12pm ET Brave Space w/wkshop Tuesday 7pm ET Advanced Brave Group Coaching Wednesday 11am ET Advanced Brave Group Coaching Wednesday 7pm ET Brave Space for All Humans Thursday cancelled - production meeting Friday 12pm ET Brave Space For the week of 6/10 - 6/14/24 Monday 12pm ET Brave Space Tuesday 12pm ET Brave Space (workshop moves to Thursday) Tuesday 7pm ET Advanced Brave Group Coaching Wednesday 11am ET Advanced Brave Group Coaching Wednesday 7pm ET Brave Space for All Humans w/Sharing Salon Thursday 11am ET Brave Space w/workshop! Friday 12pm ET Brave Space For the week of 6/17 - 6/21/24 Monday 12pm ET Brave Space Tuesday 12pm ET Brave Space Tuesday 7pm ET Advanced Brave Group Coaching Wednesday 11am ET Advanced Brave Group Coaching Wednesday 7pm ET Brave Space for All Humans Thursday 11am ET Brave Space w/workshop! Friday 12pm ET Brave Space
I had to read this twice. There’s so much here. And so much that spoke to me that made sense. Gratitude, Emma.
Thanks for sharing! Many people can benefit from learning skills and developing emotional muscles for regulation. Developing and implementing healthy ways of coping can be a lifelong practice. You’re doing a service by illuminating this for your readers and explaining it in an accessible manner in my opinion