by Ilana Jacqueline for WEGO Health.
As any patient will tell you, there’s nothing like out of touch, unsolicited medical advice from companies to get them to slam the door in your face. When you’re sick and you’re trying to decide how to manage it — there’s simply nothing more infuriating than a tone-deaf portrayal of your illness in a commercial or print ad to make you feel alone, misunderstood and unseen.
Just as we demanded that women stop smiling and frolicking in fields during tampon commercials, so too do we demand a realistic representation of patients telling us how to live and cope with different diseases.
Real people, not actors has become a tagline for authenticity in healthcare. As patient consumers, we’ve become conscious of how gratifying it feels to see our stories represented as they are truly experienced. As we become veterans of our diseases, it becomes our duty to light the way for others as they have lit the way for us.
So who do patients want to get their advice from outside the exam room?
Becoming An Advocate of Influence
Like many others, I became an accidental influencer when I started sharing my story through my blog. I was writing about my highs and lows, my hospitalizations, and helplessness as I fumbled my way through a new diagnosis. I talked about the mental olympics it takes to go from being told “this is how you’re going to treat your disease” to taking an active role in planning your treatment with your doctor. I talked about leaving a place of shame and self-consciousness and asserting my voice in the exam room.
I found myself blogging about how if the patient-doctor relationship was a two-way street, we might actually end up where we wanted to go.
Across the internet, my journey was mirrored by cancer patients, autoimmune patients, chronic pain patients–and so many others. It wasn’t long after I started my blog that I was nominated for a WEGO Health Award. A company that celebrated patient leaders and their contributions to awareness, advocacy, and innovation. I found an entire network of patients like me who were utilizing their social platforms to usher in a new era of support for each other.
We were different from the influencers hawking diet supplements and fashion accessories. We were setting the bar for humanizing healthcare and by sharing our reviews, tips, and honest revelations we were creating a new breed of trendsetters: the proactive patient.
In Sickness and in Social Media
When it comes to patient influencers, it’s not the images of airbrushed and toned models showcasing glittery packaging that comes to mind. Patients who follow other patients that they respect and admire are still thinking, I want what it is that they have. It’s just not always as obvious as new kicks or flashy gadgets. How do you showcase quality of life in a 30-second video or a 120 character status?
Often it’s a patient who’s able to say, “I did find support from my doctor when I came to them with my unmanageable symptoms” or “I found the right tools to help me explain to my family and friends how my disease is making life more complicated right now.” Or simply, “I’m not coping well right now, but I’m not ashamed.”
As it turns out, social media really can be the prescriber in how to live realistically with our disease — outside the scope of what our doctors can suggest for us. And I’m not talking about recommendations of literal supplements or diets, but an example of how real diseases progress in the real world. How they touch on our school, work, relationships, sex lives — how they influence our emotions and choices.
There is a bigger story being told in the captions of our fellow patient’s feeds than we have ever seen in the tagline of a magazine ad for our meds.
Social media can give us a matrix of examples for the difficult choices ahead. These stories can help us to understand our symptoms, explore treatment options, and find our footing in a new world of unanticipated personal responsibility.
Yes, we need our medical experts, and we need support, but we also need these influencers as pivotal allies in our journey.
For years they’ve been establishing their presence across Facebook, Instagram, and Twitter, transcending the role of support group leaders and becoming influencers for their condition.
And now? They’re ready to open their eyes and @’s to collaborations with pharma.