on August 11th, 2015 No Comments
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 column comes from a patient with Marfan syndrome.
Being an advocate to the medical community is an important way to raise awareness of your condition.
Many people throughout the years have asked me why I became an advocate, and my answer is found in what was a perfect storm of several factors. One large one was losing my ability to work in the executive career that I had made major advancements in. This loss, coupled with having to navigate the social security disability system and the back-and-forth with my private disability insurance company, made my overall health (both physical and mental) much worse. It’s one thing to have to suffer with one’s health (or lack thereof) but to have to fight for benefits that you’ve earned and payments from a private insurance policy that you’ve paid decades for, while dealing with the many financial challenges that accompany the incredibly difficult decision to stop working make for a very lonely and aggravating time.
By going through rough times, I learned what works and what to avoid – and I made a promise to myself that I would help others through the process. I want to be a source of support and let patients know that they’re not alone and that there are better days ahead. Not only am I helping others advocate for themselves but also by doing so, I help myself. It’s a good feeling to help another person; it’s my medicine for dealing with my day-to-day health challenges.
It can be daunting, however, to do advocacy work and to reach out to the medical community, whether it be a hospital, a medical school, a local health fair, a private medical practice or your own doctor/health-care provider’s offices. In the last 15 years of working on various forms of medical advocacy, I’ve found through trial and error some useful steps in obtaining the best results in each area of the medical community and all health-related entities.