How Our Patient Voices Are Being Heard
Our patient voices have become very important lately to regulatory agencies, pharmaceutical companies, research projects, health and wellness organizations, and dozens of on and offline media outlets. They’re seeking knowledge about what it’s like to walk in our shoes. We’ve become important for a variety of reasons, some for profit and others for purely altruistic concerns.
The path we travel can sometimes feel lonely and bleak if we believe our medical team doesn’t listen to our needs. I’ve heard time and time again from people in our community who complain about their unanswered questions after visiting their doctor.
Over the years I’ve been involved in many patient panels sponsored by companies, mostly pharmaceutical, who ask pointed questions to hear what patients like and don’t like and what we’re looking for to answer our needs. I make it a point to be brutally honest about my personal feelings and also what I’ve heard from the MS community.
I’ve participated in many surveys that ask a handful of questions on behalf of unnamed companies who are looking to gather patient data. It feels somewhat awkward when I don’t know their identity but my answers stay the same. Honest.
We are tired of not being heard. We don’t have Bucket Challenges to raise awareness about our disease or slogans that go viral like Black Lives Matter. Granted, we have fundraisers like the MS Walk and Bike MS to raise money but those don’t allow folks to step into our shoes.
Imagine my delight when this week my beloved-since-childhood New York Times published the first in a new weekly feature series called Disability. It will feature weekly first hand perspectives of people living with disabilities to help readers enter a world that most avoid confronting as long as they can.
After all the years of hushed tones and long faces after saying the word disability, and all the misinterpretations and misnomers of what MS and disability are, this new feature is a welcome addition to give us value and hear what we say.
This New York Times feature is an opportunity to explain to the world how we feel about our unpredictable, incurable, impossible and disagreeable disease. It’s another notch in our belt as a community to be recognized for the great value we add to the world. We have a lot to say and we deserve to be heard.
So I applaud my favorite newspaper for reaching out by joining their hands with ours, to begin a new conversation that will educate, enlighten and inform readers. But, most of all, it will shine a bright light on the entire disability community who will no longer be forced to live in the shadows
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