1/8/2020 by Share Your Story

Have You Shared Your Story With The World?

Barriers to healthcare-access take many forms: rare or invisible dsease, lack of insurance, high costs, isolation.... Share YOUR story with us.


Share YOUR story, it’s important.

IT GIVES YOU AGENCY

Telling your story gives you agency. Instead of being a passive observer of your life, you get to really think and reflect on what certain experiences have done to you, for better or worse. And because the lessons of your story can be helpful to others, you become empowered as a helper.

Alzheimer’s disease runs in my family – two grandparents and my own father. But I find that by sharing some of the many experiences and lessons the disease has taught me, I have helped others prepare, cope, or realize that they are not alone. In knowing that my words have given comfort or useful information to others, I find some redemptive value in an otherwise tragic experience.

IT HELPS YOU UNDERSTAND YOURSELF

Life doesn’t usually slow down enough for us to reflect on what we believe and how we feel. When you share your story, you have to think about what you have experienced, how it has shaped you, and where you stand on the issues you faced.

A beautiful thing happens when you write – you get reacquainted with yourself. Sometimes I write something down then I wonder, gosh, I never realized that was so important to me. Or, in trying to explain one thing, it draws my thoughts to another thing, and another, then suddenly I find myself thinking about something I haven’t thought about in years. This has led me to become a huge proponent of Expressive Writing. But more on that another time.

IT DIRECTLY HELPS OTHER PEOPLE

After I wrote “Talking To Your Doctor About Pain” for Countingmyspoons.com people started reaching out to me. As others realized they could put some of what I had learned and experienced to good use, they wanted me to know. That felt good for me, but it might have made a big difference for one person in particular who only had a argumentative relationship with their doctor. She said “I never stopped to realize that (my doctor and I) weren’t communicating”.

Often the most impactful lessons we learn in life come from our own experiences. But a relatable narrative by someone else can have a very similar impact. When you share your story, you may never know how it changed someone else, but it has.


SHARING WITH PATIENTS RISING

When you SHARE YOUR STORY with Patients Rising here’s what happens:

  • We read it, all of it, every single story
  • We contact you to thank you or ask questions
  • If it fits our mission we might publish it
  • We work with you to refine it (that’s with me, Jim, I’m your editor)
  • If we publish it, it goes live on our website and gets distributed to our Facebook, Twitter, and LinkedIn accounts. We might also do a mini-feature on Instagram. In total, that’s about 120,000 potential people (and growing) who might read what you wrote.

It’s worth knowing that most people who end up getting their story published on Patients Rising end up writing for us again, sometimes several times. Some have even gone on to become advocates and ambassadors with us. We’re a small but tight family 🙂

One other thing sharing your story does that is worth mentioning is…


IT OPENS MINDS

Whatever your condition might be, you’ve probably been pigeon-holed by someone. People with migraine are overly dramatic, chronic pain is mostly in the mind, diabetes is for people who eat too much. When you share your story, you get to set the record straight.

Speaking of setting the record straight… Cynthia Murphy wrote her story “So Much Greater Than Just Face Value” about living with a craniofacial condition. There’s so much truth and sincerity in that article that it almost broke the internet. Cynthia went on to become an intern at Patients Rising where she is meeting certain requirements to graduate from Purdue University with a Master’s degree in Public Health. We have lots of great relationships with our Contributors.

But telling your story also breaks down stigma and prejudice. If you know someone who thinks, for example, that people with mental illness need to just get over themselves, then your story might remind that person:

  • I have a life and a job and a family just like everyone
  • I’ve seen several doctors already; I’m proactive, not lazy
  • I am experiencing something that one of your loved ones might be experiencing but hasn’t talked about
  • Yes, there are Americans like me

When you share your story, you change yourself, you change others, and just a little bit, you change the world.


Share your story with us at Patients Rising. We look forward to meeting you.

– Jim

Jim Sliney Jr. is a Registered Medical Assistant and a Columbia University trained Writer/Editor. He createsjim patients rising education and advocacy materials for patient support groups and has worked closely with several rare disease communities. Jim also coordinates the patient content for PatientsRising and loves collaborating with other writers. Jim is a native New Yorker where he lives with his wife, his niece and all their cats. Special skills: beard maintenance / pizza. Twitter  Email 


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