The topic I am writing on is one I am still learning. I am sharing my journey as I walk it. I sincerely hope that you find some value in this.
As I grew up, I learned that there were things outside of my control, and that how I felt was one of them. And so, because I could not change my situation–or how I felt about it–I walled off my feelings. Now, as an adult, I am learning that I need to get back in touch with those feelings, because they are the way that I know that I need to make changes. Which. Um. Sucks. A lot. Because there’s a loooooot of repression, gaslighting, denial, minimizing, and… well, trauma that went into that wall.
My nervous system has been on overdrive since I was really young. I have to learn to
1. Recognize body signals
3. Know how to accommodate myself
4. Recognize when I subconsciously inhibit my needs
5. Consciously override it
6. Soothe my nervous systemAutistic Science Person
First step is to acknowledge the trauma before the trauma, so to speak.
So I have to acknowledge that wall first. The whole context of it. There are reasons why I stopped paying attention. It used to be dangerous for me to acknowledge the reality of my body and mind. That is no longer the case. I have worked very hard to change that. And there are ways it is still dangerous. Those are real too. I don’t have to go back and try that again to prove it to anyone. I now have the power to listen to the wisdom of my self.
The main strategy that I have heard people recommend to get over that wall is meditation–always the kind which uses one’s body to get back into touch with oneself. Unfortunately, meditation is a trigger for me. A deep breath in and a long one out has the unintended consequence of being tied with previous trauma. It’s actually a common trigger, which a lot of people don’t know about. Because of the many years of masking and chronic pain, my body is not a safe place to be.
So I need to reclaim it.
I need to add joy into the discussion. For so long, it was nothing but struggle. And then I told myself over and over that things were good to get through. I need to reframe the possibility of what my body feels to reconnect. For me, a productive conversation with my body has to have both. So I am rewriting possibilities, renegotiating a relationship. We need to understand that we are on the same side again.
Wellness is the freedom to oscillate through all those cycles of being human.Drs. Emily & Amelia Nagoski
This is where I listen to myself. As an autistic person, I have been working on getting in touch with my body through stimming. I have huge gratitude for Riah Person and their videos, tweets, and openness about stimming and play. It has been key for me to give myself permission and reconnect with my body. For me, body talks begin with swinging through the air, spinning in place, and the sensory experience of motion and touch and sound. I am redefining how my body relates to the world to be one of sensory joy and wonder.
It’s hard, learning to listen to my body again. I don’t always want to. However I know that is what I need to do if I want to be healthy and happy. I keep thinking that she needs so much, because I am used to running her ragged on my and others’ demands. That’s not fair. She does so much for me. And if I want her to be well, to keep doing all of the things that I want to do, the things that we want to do… I have to show up for her. This is a two-way relationship, and I’ve been acting like it only goes one-way.
It has been very helpful for me to find community. People who also have intimate relationships navigating their bodies day-to-day. My disabled friends are a lifesaver. They are people that I can laugh about my health with and discuss the tips and tricks of navigating my body’s relationship with the everyday. Also, as someone for whom bad health is normalized, it is very helpful to have someone who can tell me when and how to go to the doctor… or even help figuring out what to do when you can’t.
For assistance accessing community, Tinu Abayomi-Paul has assembled a very helpful list of Twitter hashtags that is available on Kofi. Pay if you can. Not enough people have, and this is a monumental service she has provided. Social media is often the best way to find disability community because physical spaces are frequently inaccessible.
My disabled friends have provided space for me to soften in a world that demands hardness. They have held space for me to be a person rather than a provider, and helped me understand the value of limitations in an honest way. Rather than one of toxic positivity where everything must have a silver lining, community holds space for what is.
Seeking medical care
Typically, my body will give me status updates throughout the day. Hunger, thirst, aches and pains. Many of those signals are dulled over years of living in fight or flight. Occassionally though–more so ever since I’ve made an intentional effort to reconnect–a signal comes through… And I dismiss them without a second thought. Boop! Gone. I used to rely on saying it loud, however that is risky to do.
I have at times relied on community to remind me of what I forget. The most reliable way I have found to keep track of what my body is telling me? There’s an app for that!
I have a handy little app called Day-lio which I use to keep track of pain. I have a scale that I use to keep track of various symptoms, which I can then use to go to the doctor and report those symptoms. I also track whether or not I have exercised, etc. It is very helpful to have kept track and taken photos of things that I cannot remember well enough to inform the doctor on–there are some things that only images can convey. Every time I want to say “I am tired” or “I hurt” I try to make sure I have a record of it.
In regards to working with doctors, I cannot say it any better than it already has been said. Erin Gilmer has created a wonderful Care Concerns document that is available completely for free. If you want to know more about trauma-informed healthcare, I highly recommend you check out her blog cause she wrote the book. (For example, I was completely blown away by this post on betrayal trauma.) Actually. Spoonie Life distilled it down a little bit for those of us looking to make our own documents.
With the possibility of positivity and negativity on the table, I feel safer in checking in with my body. What do you need today? How do I navigate you? The practice of keeping track of data is another great way for me to make sure I am treating my body the way she deserves, and identifying if I need to change practices. We are learning how to metaphorically sleep in the same bed rather than fighting over sheets all night. Coexist rather than compete. Intentionally, and not just being thrown around by our environments.
So, that’s what works for me. How about you?