My Body Keeps the Score, by Elizabeth Baum

The last two stories illustrate how life-altering having MdDS can be, even career-ending. Elizabeth’s Q&A interview shows that being challenged with an invisible chronic illness can also be a catalyst for positive change and growth.

photo of a young mother, lifting her son in a parklike setting
Elizabeth with her son on Mothers Day 2024. Accepting the hard/bad parts of life along with the good can still look beautiful.

Elizabeth, a pre-licensed psychotherapist, writes, “I want to help people on their journey with MdDS by sharing what I’ve learned and by talking more about a really hard thing, in hopes that others feel less alone and so more people can understand MdDS and invisible chronic illness.”

Q: How did you feel when you found a community of others like you?

A: I felt understood! It’s hard to describe this disorder, to put words to the inner experience, so not having to explain or educate someone on it is refreshing.

Q: What has been the hardest part of having MdDS?

A: Accepting it. Living with it instead of raging against it or trying like mad to get it to go away.

Q: How have things gotten better?

A: Many, many small things. After a year of going to 30+ medical or healing professionals, I finally found a neurologist that works with this and started on Effexor. That helped. Then I started learning my triggers and learning what to avoid, what I can’t avoid, and what to do when I get triggered. I cried in so many doctor’s offices and they were not always very nice about it but I was told over and over again to try meditation. So I did. And I couldn’t get into it. I did it for like a week but mostly dreaded it. I started working on my mind-body connection through yoga and eventually found my way to a Mindfulness Bases Cognitive Therapy group class, specifically for people with health issues. And that’s where meditation and mindfulness started to click for me. (IMHO you need to learn these skills with people and teachers, and not on an app!!)

I also started going to an integrative health center, and I can’t tell you how meaningful it was to see someone who treated the whole body, not just one part of it, took my whole life into consideration, and took me seriously. I did the migraine elimination diet and learned my food triggers to avoid. I began working regularly on regulating my nervous system through acupuncture, myofascial massage, and craniosacral therapy. These are now integral parts of the way I manage things. I learned what I needed to do to get deeper, more restorative sleep. I think of my body as a gas tank. Things run about as good as they can – if I remember to refuel by managing diet, meds, meditation/mindfulness, exercise, massage, craniosacral, sleep/rest, etc., – but if I deplete and continue to run on empty, I will regret it.

Q: What personal message do you want to share?

A: One of the things I learned in this chronic illness journey was how before this diagnosis, I lived in almost constant fight/flight in my body and nervous system. My anxiety and stress levels were through the roof almost all the time. I didn’t sleep well, my body was too tense! I pushed through all the time — never took it easy, never rested. I did not become this way on accident — it all makes sense when I look at my childhood, complex trauma, dysfunctional family relationship issues, fundamentalist religion, and one very critical parent. Toss on lifelong anxiety, depression, and a real disconnection from my body and, yeah, of course I get some kind of chronic health issue. It all makes sense.

It’s taken years of emotional work and healing in therapy (including going back to grad school and becoming a therapist myself!), becoming embodied, mindful, and practicing skills like radical acceptance, learning a heck of a lot about my condition and a heck of a lot of trial and error to see what might help, and calming my fight/flight and incessant anxiety – I mean, they’re not totally gone but they’re not what they once were – to get where I am today.

For the longest time I wanted a pill that would make it all go away. I tried so many treatments. I hated it and fought against it. That’s not to say I’m happy about it today and I like it. No, it sucks, and I feel anywhere from a little shitty to a lot shitty every day. No breaks. But what’s different is that I’m okay with it being here. I don’t fight it; I accept it and am curious about what it’s telling me. I am able to find meaning in the suffering — it helps me be a better, more empathetic human and therapist.

Elizabeth Baum
Motion-related MdDS
Age at onset: 30s

June is Awareness Month (JAM) for MdDS. 
If you are an MdDS patient or supporter of a person suffering with the disorder, your story can be among those shared during JAM on our blog and social media pages. Especially impactful stories may be featured in our next newsletter sent to 3,000 subscribers! To get started and help raise awareness, Share Your Story today.

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Discussion Policy
  1. Holley D Rauen

    Thank you, a thousand thank you. Your story is an absolute inspiration to me and an affirmation on so many levels. I already had a mindfulness meditation practice but now it is deeper. I am going back to the yoga studio soon with renewed commitment to love myself in this process and to know my limits. I am very grateful for all you wrote here and hope many many people read this story. I love the part about no longer fighting against the condition. That kind of attitude promotes all kinds of healing. I keep putting off writing my own story here in detail because I am fairly new to being certain of my diagnosis (had this 14 months now, never lets up except for in a moving car) and connecting through others with MdDS. Finding this community has been a lifesaver to me. Gratitude goes a long way so Thank you, thank you, thank you all.

    1. Elizabeth Baum

      Hi Holley, thank you for reading and for the kind words. You sound like you have a good head on your shoulders in a hard situation— keep going! I hope you do write down and share your story someday. You’ll know when it’s the right time.

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