1. Finding courage to look for a community at Medx 2014 & 2015
Spurred by experiencing my own vague symptoms and watching autoimmune disease pop up in my network of family and friends, I found my passion and dreamed of reimagining research, diagnosis, and care for all my loved ones suffering from mysterious illnesses. Chasing that dream, I fearlessly dug into the science of epigenetics, microbiomics, and other –omics and how it all connects to autoimmunity.
However, I was not without doubt. I needed courage and I looked to those close to me for support and strength to stand against the status quo. Together, we spent months trying to figure out a way to present this new-aged information I found in a no-hype, non-judgmental way so that the audience could decide what might work best for them.
Some of the topics I discussed were controversial – like “leaky gut” – and I was laughed at and ridiculed, even called crazy. But, daring to step out and speak revealed a broader community who would stand-up and challenge the status quo alongside me.
Along with the Stanford MedX community, I found other emerging communities such as SmartPatients, MyHealthTeams and Wego Health. Then, voices of autoimmune patients started coming forward to help me raise awareness and build momentum.
Inspired by my reception in the midst of ridicule, I felt there was more work to be done. Since 16% percent of the US population struggled with over 100 different types of autoimmune disease, I challenged my new-found MedX community with a patient survey and a collaborative workshop to highlight the massive unanswered needs of chronic illness and autoimmune patients.
Pleasantly surprised by the 400 responses to our survey and attendance of the workshop by patients and practitioners, our taste of autoimmune frustrations became a full-course dinner.
Obstacles to diagnosis, fragmented care – the need for collaboration and coordination between providers – were no longer vague guesses that a handful of wacky patients felt, but solid facts and common threads between many sufferers that strengthened our desire to collaborate and help one another.
2. Building Confidence – Reaching for my stretch goals
Empowered by the support I received from Stanford MedX, I thought, “why not bring my message to South by Southwest (SXSW)?” I knew it was a “shoot-for-the-stars” thought, but I wanted to bring autoimmune disease to a larger audience.
Unbelievably, I got into SXSW with a panel of digital health gurus. Together, we not only introduced the audience to autoimmune diseases like Crohns, Lupus, Psoriasis, and Rheumatoid Arthritis, but exposed them to the functional versus conventional medicine divide as well as how to take charge of their own health and habits.
With SXSW under my belt, I thought back to my earlier self – that woman who used to be “patted on the head,” by her bosses was nowhere to be found. Now, my thoughts were valid. My thoughts were self-evident.
3. Expressing Feelings – Being genuine with myself, my goals, and others
Seeing my thoughts and ideas as self-evident was amazing. That gave me confidence to keep moving forward, but I began to realize that although my thoughts were validated, I needed to continue to be genuine and real, to be who I am and feel what I feel.
I needed to “get real” with myself. Up until this point I was so preoccupied with trying to get others to understand, see the need, and gain support for my ideas around chronic and autoimmune disease. I kept myself so engrossed in that battle so that I wouldn’t have time to accept and reveal that I, myself, was also one of the patients I fought for. With the battle for validation ending in victory, I was left feeling a newfound inner confidence to share my personal story and connect to others personally.
So when the opportunity to share my personal story and struggles came up in the form of a public blog article and a TEDx talk, I realized that I wanted to have a conversation with my audience, not a speech. I wanted to connect and inspire change for our futures.
I got real with the world and shared my personal feelings: fear of rejection, wanting acceptance while opposing established dogma; being caught between medical modalities that might as well be speaking different languages, and fear for my grandchildren who may face an indifferent world unequipped to battle chronic diseases.
From my ridiculed 2014 MedX self to 2017 TEDx Wonder Woman, I found gaining validation will never be the end goal. Rather, it was finding my own personal power.
4. Living as a Fearless Experimenter
After a successful TEDx where I unlocked my reserve of personal power, I felt more like a fearless experimenter than ever. I wanted to give chronic and autoimmune patients something they could use now – something we could all use facilitate change to be carried on through future generations, and think outside the box whether we feel like we are in one or not.
Using my own experience and research, I created a guide to help patients achieve their optimal wellbeing, or become “CEO of their own health”. From interactive exercises to help patients define goals and action steps, to curated information and checklists to help patients navigate the healthcare system, incorporate digital health tools, experiment with lifestyle modifications, and more, I hope that this guide empowers readers to get educated, experimental, and assertive, and embrace being ahead of the curve.
Download your free copy of my patient guide here
5. Looking forward
As I found out, at first new ideas are ridiculed, perhaps even opposed, and then gradually accepted. But the journey doesn’t end with acceptance. It ends with pushing forward, finding personal power and using that power to achieve what you once thought impossible. For autoimmune disease, it is possible for us to work together and bring data to the anecdotes we’ve shared in order to help the next generations modify behavior and live better. If each of us steps out of our comfort zone – unafraid of the ridicule we may face, because we know that validation and personal power will follow – we can create a new version of health for the next generation.
What has helped you find your personal power? Let us know what works (or doesn’t) for you!