We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s bonus column comes from Pattie Brynn Hultquist, C.H.
“How do you do it?”
I get it. A mother of five, a wife, a childcare provider, president of the condo board. Chartered herbalist, scrapbook design team member, wool and fiber spinner, avid camper. Yoga enthusiast, a weight-training type-2 diabetic – the list continues.
How, exactly, does one manage living with an autoimmune disease like lupus: the disease of a thousand faces, the epitome of “You don’t look sick”?
When I first received my diagnosis of systemic lupus erythematosus I was devastated not only for myself but for my family, friends and extended personal communities. It wasn’t just me receiving a diagnosis on that brilliantly colored fall day in 2010; it was my entire social network.
Lupus can affect people very differently. Some people have skin issues. Some have joint pains. Some, like myself, also have had a heart attack, pericarditis and kidney issues that makes taking medications a game of pharmaceutical roulette: sometimes, medications makes me feel worse.
That isn’t living. That's existing.
I joined forum after forum, community after community, group after group, all over the Internet. I had to know how to live with an autoimmune disease. What I found were either the “Whine-1-1” or the “Positive 24/7!” I left them all.
I felt a little like Neo when offered a choice between the red pill and the blue pill.
Taking neither and forging my own way through this made-for-TV-movie kind of life living with a chronic disease.
I started a blog. I started sharing how I, a mother of five in the chaos of my reality, was living with lupus. I wrote about the good, the bad, the ugly, and the deliriously exhausted life I live. It struck a chord with many who know chronic illness for its complexity. There were so many people experiencing the very same thing!
I went from blogger to globally recognized health advocate. And one day I told my primary care physician about my writing. I told her about how many people are suffering in silence because they feel “invisible” not just with their health-care teams, but with friends and even family. I even told her about how I felt that way, myself. She told me, in all honesty, that she had never really considered the magnitude of social effects that someone’s diagnosis can engender.
I was stunned. Sure, she had mentioned my husband and children at our appointments, yet she conceded that she had simply not considered event invitations no longer extended (I simply can’t commit to one way or another because lupus can flare up at any given time with pain, exhaustion or sickness), or, of having often to redefine my abilities and seek out new friendships in order to keep proactively engaged in life.
That was the day I illustrated the research, networking and usage benefits of social media as my outlet, and she became empowered to begin treating the socio-emotional impact of health care: how interpersonal communities and social media can be a powerful tool in the health-care toolbox for individual patients.
The result? I was validated by the health-care professional who is most intimately aware of the clinical and physical demands of this disease on my body and how it affects my entire social network. Validation heightens my confidence to be a proactive patient. Proactive behavior advances whole-body health care and awareness.
Choice is a beautiful thing.
Pattie Brynn Hultquist, C.H., is a globally recognized lupus and chronic illness health advocate at her weblog, Lupus Interrupted. A team captain for the Walk for Lupus, held annually, she participates in fundraising efforts at Gold Award levels for Lupus Ontario. She can be found on multiple social media platforms sharing information, resources and the realities of living with chronic conditions, her supportive family always within reach.