Have you met John (JohnJFB126)? He’s another member of the 2016-2017 Team of Advisors. John is a musician, husband and father of four. He’s also living with MS.
For John, living with an “invisible” disease is challenging, and he hopes for more compassion and understanding from others in the future. Here, John shares how he finds critical support in the PatientsLikeMe community: “It reinforces that I am not alone.”
What gives you the greatest joy and puts a smile on your face?
What gives me the greatest joy and puts a smile on my face is knowing that I helped someone.
What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?
The greatest obstacle living with this condition is its, oftentimes, invisibility. Especially when compared with other chronic and disabling conditions. Societal shifts need to occur resulting in more a compassionate or understanding of these challenges are a more concise, comprehensive overview of the disease and how it truly is idiosyncratic.
How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?
I have described this condition by comparing it to a frayed electrical cord with the inability to properly transmit the energy required to execute a function. Or, think of having MS as your computer’s hard drive sending a program execution but due to corrupt transmission lines/data paths, it needs to take additional time to map an alternate route to obtain the information and/or activate the desired program/effect.
If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?
One piece of advice I would offer to someone newly diagnosed with a chronic condition is: If you’ve been diagnosed with a chronic disease, it’s chronic and not necessarily fatal. Learn as much about the condition and include at least one person in this learning to serve as a buddy and/or support.
How important has it been to you to find other people with your condition who understand what you’re going through?
It has been incredibly important to me to find others living with the condition and who may be able to relate to what I’m going through. Their insights, struggles and successes have proven to be invaluable; it reinforces that I am not alone.
Recount a time when you’ve had to advocate for yourself with your provider, caregiver, insurer, or someone else.
I have often had to advocate for myself with my insurance providers; needing to articulate the need for coverage of a procedure or medication as those items were critical to my ongoing care and health stability.
What made you want to join the PatientsLikeMe Team of Advisors?
I see the opportunity to join the PatientsLikeMe Team of Advisors as the chance to learn, give, and make a difference in the lives of individuals around the globe!
How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?
The PatientsLikeMe community has been a source of reference, strength, and encouragement for me as I cope with the diagnosis given me.
If given the opportunity to participate in efforts to change something which would transform how the current healthcare system is implemented and designed, what would it be?
I would work collaboratively with government (legislators/representatives), pharmaceutical and insurance companies and the medical community to transform methods for the delivery of care to persons with chronic disease diagnoses and other long term health illnesses. The goal being to streamline, reduce the need for repeated/duplicative procedures, create a system that “speaks the same language” across all platforms, and delivers timely services to each patient (“tailor made” care).
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