Freakout in Wonderland

How I handled the mess of my diagnosis

Lissa Aguilar
Nov 4 · 4 min read

Terror. Hopelessness. Confusion. All emotions rushed in as the doctor made the diagnosed - multiple sclerosis. I didn’t have a map of where to go next or how to handle my panic. That was 2012.

Fast forward to 2019. I feel — less panicked, less confused, more optimistic, more focused. I’m busy easing my inflamed body and overly-reactive immune system. I reflect now on how I managed to get here through all the trials and information when living with a chronic condition. How did I make sense of this mess and continue to learn about what works for my condition? I needed to ask myself key questions to navigate the deluge of information available to us:

What the f*ck is multiple sclerosis?!?!

What do I do now?

What do I want to do with this knowledge?


What the f*ck is multiple sclerosis?!?!
After some time freaking out, therapy (and some gin cocktails) to ease the transition I started to drill down into what it all was. Unfortunately, there was no app to easily onboard me into this diagnosis — no onboarding in general (that’ll be the next post) — I went straight to Google! — Not recommended for those who are easily panicked. The internet is wild!

I started making a list of resources starting with websites. MS National Society, European Multiple Sclerosis Society, MS Society of Canada — why stay local? — Internal Multiple Sclerosis Management Practice, Patients Like Me, forums, consortiums, webinars, phone conferences, books etc. I grabbed all the resources to help me understand what I was living with and what to possibly expect in the future. I built my own reading list and questions to help me identify my gaps in knowledge and to keep me focused.


What do I do now?

I started looking for doctors and different centers that dealt with MS and all its crazy. When I was first diagnosed, it was an old general neurologist, who told me I had a lovely brain — but those white specks “were not good.” That image reminded me of a snow globe after shaking it vigorously. I was immediately placed on Rebif. Once I found my clinic and a newly enthused neurologist, I was switched to Tysabri. She meant business and wanted to go for the most aggressive option at the time without totally nuking my immune system. She also threw in a prescription for 12 weeks of PT. Oddly, no food or lifestyle modifications. (I still stuffed my face on the processed foods. That isn’t hurting me right? smh). Filled out some surveys and met with a psychotherapist to measure my level of stress and/or depression. (Just smile. You’re fine. Ain't nobody got time to be depressed! I got things to do!) — I was living in New York City and self-care wasn’t really a thing for me at the time.

Google didn’t have much involvement in this step aside from finding some personal blogs, Patients Like me, and a few public forums. I had to do some new inner work to get a grip of this new reality — enter the self-help books stage right. (Sorry therapy you kinda helped but insurance costs!) Then the psychological, spiritual, transcendental, metaphysical, stoic, philosophical, scientific authors flooded in. I needed all my inspirational favorites to help me build a new map. Wonderful close friends who started their studies in functional medicine and naturopathy introduced me to a holistic integrated view of care. Time to be more aware of my entire self — my food, body, activities, mentality,

2019. I’m still a work in progress; eating differently and working out has helped reduce symptoms. Drinking less…Did I mention a “work in progress” ? — ever enjoyed a smokey 16-year-old scotch!!??!! Deliciousness!


What do I want to do with this knowledge?

I’m still reviewing studies on PubMed and reading up on the immune system. My arsenal has grown to other apps and wearables to figure out behavior to improve my health. I borrow tools from functional medicine to keep me focused on care. I’m using exercise plans from my physical therapists and trainer, microcurrent therapy and acupuncture. I’m finally moving on the right path. I know there isn’t a cure. But I believe there are solutions to help heal. I don’t believe drugs are the ultimate answer to my health. What I do know is I have a different sense of self, a different understanding of the body, what movement is, what rehabilitation can be. I’m willing to explore it and be an active participant in my care. I figure with my love of learning, research, and technology — when designed with good thoughtful measured intention — I can create a better map for my health. A map I’ve already started sharing with physicians willing to listen.

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