Hello dear ones,
Last week I was looking forward to writing this newsletter, and then I woke up with my body in one of the worst pain flares I’ve had in a long time. It passed after a few days and I thought to myself, “Thank goodness,” and looked forward to writing this week. This morning I woke up with high levels of pain once again. As a chronically ill writer, I often find myself in this place where I must choose between rest and writing — both are nourishing for my bodymind. Today, I am choosing to write and then I will head to my bathtub where I will soak this aching body and await the pain to lift.
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Within the past few months, I have had to reckon with the reality that my health is not in a good place. In fact, it hasn’t been this bad since 2016/2017, when I was hit by chronic dissociation and chronic pain in one fell swoop (I’d later receive the diagnoses of fibromyalgia and complex trauma with structural dissociation). For months I was overcome by brain fog, pain coursing through my tender points: neck, shoulders, wrists, elbows, hips, and knees aflame. No amount of sleep resulted in feeling rested. My pain was anywhere from a 7-10 on a daily basis for months — one constant flare up. Thanks to somatic therapy, over the past couple of years, my pain has been sitting around a 3-5, and my flare ups do not last longer than a few days at a time. Recently, this has changed. I have been sick more frequently, pain flares more common, fatigue back. It has been a reckoning for me. A reminder that this aching body needs to be tended to.
Trauma makes itself known in and through our bodies. Those of us living with trauma know this all too well. Chronic pain, fatigue, inflammation, disordered sleep, digestive issues: signs of an overactive nervous system. Emotional and physical stress impacts the hypothalamic-pituitary-adrenal axis (HPA axis), which is “a complex network that controls our body’s reaction to stress and regulates a lot of body processes such as the immune response, digestion, energy usage, and mood.” Our body is reliant. Disordered sleep, caused by a traumatized sympathetic nervous system on alert, causes a chain reaction that impacts other systems in our body: muscular (ALS and Charcot Marie Tooth), digestive (IBS), integumentary (eczema, psoriasis, rosacea), immune (ME/CFS, rheumatoid arthritis).
What I have learnt through years of somatic therapy is that my chronic pain is a survival resource that my submit response uses when fight and flight aren’t options: "If I'm in too much pain to move, then somehow, I will remain safe," our nervous system reasons. It was though my body was forcing me to give up. As someone who grew up having to sacrifice my needs to prioritize my dad and brother, I know submit well. In many ways, my chronic pain was my body’s way of saying “We’re done. We can no longer sacrifice our needs for others. You will now be too sick to care for anyone but yourself.”
Chronic pain and shame are intimately connected. There is, of course, the shame caused by being a body in pain in an ableist world. And shame can activate our submit response and our submit response uses chronic pain to help us give up. "There's no use in trying to receive love, you will not get it," it tells us. "Why have boundaries when they'll only be ignored?" it asks. When my chronic pain flares up, i know that there is shame that needs to be tended to. Last Tuesday, still in the throws of the pain flare, I saw my therapist. Together, we figured out what was happening. I have recently started to process years and years of sexual and relational trauma. And I feel so much shame about the ways in which I used sex to help me escape so much pain. The sex I was having was barely consensual, and thus caused even more trauma.
My therapist said to me, “Sometimes to get out of a bad situation, we have to put ourselves in another bad situation. Look at where you are now.”
As she said those words, I could feel myself take a deep breath, my chest expanding. I knew that those were the words I needed to hear. The antidote to shame is compassion. In offering myself compassion, in doing the softest thing I can do, I tend to the emotional and physical pain that are crying out for the love and care we didn't receive once upon a time. In tending to the shame, which makes itself known in my aching body, I am able to open myself up to the grief of all that I have endured.
After this session, I felt my pain lift. And now, a few days later, it is back again. A reminder that contractions will follow expansion. For now, I do my best to tend to this aching body. I will ease myself into a hot bath. I will say yes when I friend offers to come over to make me dinner. I will return to the question “What is the softest thing I can do?” and I wait for my nervous system to realize that we’re safe now.
If you’re interested in learning more about the relationship between chronic pain and trauma, I have a few pieces of writing that you can purchase on my website: my zine “Soft Magic #1: Understanding Our Trauma Responses” and my dissertation “Touch Me, I’m Sick: Hysterical Intimacies, Sick Theories.” I also write about living with a dissociative disorder on my blog.
Two weeks ago, I had a virtual photo shoot with Megs Elemans and it was such a beautiful experience. Please give Megs a follow on IG and get in touch if you wanna chat about your own virtual shoot!
Here are a few things that helped me feel a bit better during this last pain flare up:
Reading! I recently read this essay by Leslie Jamison called “Dreamers in Broad Daylight” that was just so beautiful. Shoutout to Raechel Anne Jolie’s Radical Love Letters newsletter for sharing this with me.
Smoothies! Knowing that I’m getting my daily fruit intake does A LOT for my overall mood. Here are the ingredients for my fav smoothie:
1/2 cup of yogurt
1/2 cup of oat milk
1 banana (fresh or frozen)
1/2 cup of frozen blueberries
1/2 cup of frozen mango
Juice of 1/2 a grapefruit
Sprinkle of chia seeds + hemp hearts
1/2 teaspoon of coconut oil
Heart Stoppers. This Netflix show is a gift to the universe. Centered around a group of queer, trans, neurodivergent besties, Heart Stoppers is the queer teen romance show I’ve always dream of. Legit ugly cried at the ending and was so stoked to know that they have been renewed for two more seasons!
A dear human in the CARESCAPES community has a GFM that could use some support.
Thank you for sharing all that you do. I am new to all this. Having experienced pain for several weeks I saw my GP who suspects fibromyalgia but we’ll need to rule out another else autoimmune too. The NHS waiting lists are long and now I’m just trying to find some pain medication that works - after a few days they all stop working. Reading as usual has been my go-to source; to find others writing like yours and knowing I’m not the only one is huge. I’m so sorry for your pain too.
A friend messaged today to tell me about a book I might like which I’ll share here too in case anyone else finds it useful. It’s called Tender Points by Amy Berkowitz. I believe it was originally published in 2015 but there’s a updated version available; this is its summary:
‘Tender Points is a narrative fractured by trauma. Named after the diagnostic criteria for fibromyalgia, the book-length lyric essay explores chronic pain, sexual violence, and medical sexism through lived experience and pop culture.’
Hi Margeaux! This is the first newsletter of your's I've read and I appreciated it deeply. I'm disabled with low support needs, but have survived 4 hospitalizations for critical, unexpected medical trauma in the last 8 weeks. Thank you for sharing your story and making me feel a sliver less alone in mine.
ps - I also see a somatic therapist and it's the best!