Calling/Casting All Patients: What’s Your Chronic Illness Story?

shutterstock_63218473I’m looking to help patients share their story with others through my new book. ¬†This book is aimed at the chronic illness patient community and will tackle subjects like career, sex and relationships, self-esteem and support systems.

It ain’t always pretty–but if you’ve trudged through the trenches, you know should know there’s usually somebody kicking up the same mud right behind you.

Share your advice, your mistakes. Tell us where to go when we hit the wall.

GUIDELINES:

  • Please send your responses to IlanaWrites@gmail.com with your name, age, and city. If your story is published, you can choose whether or not to be anonymous! The important thing is to be authentic.
  • Please send responses that are NO LONGER than four paragraphs. Try to focus your responses on the message that you feel would help a patient in a similar scenario most.

Questions:

On the Topics of Beauty/Self-Esteem and Sex

  • How do you handle sex when self-conscious about surgical scars or implanted medical devices like ostomy bags, PICC lines or insulin pumps?
  • What has helped you overcome some of your self-consciousness due to these scars or devices? (Therapy, talking with friends, covering things up?)
  • What advice do you have for other patients who feel self-conscious about their visual, physical medical issues?
  • Do you have a beauty inspiration? Who and why?
  • Did your doctor or nurse ever give you any advice on how to handle social situations where your medical devices might be visible?

On the Topic of Support

  • Have you ever been to a support group for your disease or for chronic illness in general? What was your experience?
  • Do you feel like support groups are right for all patients?
  • What makes a support group a good one? What makes for a bad support group?
  • How did your perspective on life with chronic illness change after a support group?
  • Did you ever have a friend, coworker, family member or romantic partner with a similar disease that changed your perspective on living with chronic illness?
  • Should doctors and hospitals be responsible for providing support? Should insurance companies? Should schools?
  • What books, stories, radio shows or TV shows have served as a source of support for you through your disease journey?

On the Topic of Independence

  • Looking for people to share brief moments of celebration when they overcame a hurtle after a bad flare. Can be something as similar as grocery shopping along for the first time in months or as serious as heading back to school or work full time.

Posting this on Nov 3rd, my deadline is the first week of December. If you’ve been interested in contributing but didn’t know where to start–start here! All responses are appreciated! Please send responses to IlanaWrites@gmail.com with your name, age, and city!

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3 thoughts on “Calling/Casting All Patients: What’s Your Chronic Illness Story?

  1. […] Calling/Casting All Patients: What’s Your Chronic Illness Story? – letsfeelbetter.com/callingcasting‚Ķ […]

    • Elizabeth Gates

      Hi my name is Elizabeth I came down with Nocardia Nova and Bronchiectasis in the Summer of 2008 I was 47 at that time. It was a huge struggle to get a diagnosis having Drs tell me it was all in my head. I had fevers huge weight loss and fatigue. I found some amazing Drs at University of Chicago that saved my life. I vowed that I would help others with lung disease even before I was well. I have helped many people in on-line support groups and they have helped me too through some very trying times. I have talked to people on-line and on the phone from all over the world. Sometimes all it takes is to be able to talk to someone that really understands and to know your there for them just to talk or give advice. Two years ago I learned I had Mac Lung Disease and began a new treatment. At that point I talked to a therapist monthly for about a year she was amazing and helped me cope with the grueling regime of meds. I continued to help others and take phamplets and brochures to Drs to hand out to patients explaining about different lung disease. It makes me feel better and to cope to be able to help others. I also want to say how blessed I feel to have such wonderful physicians they aren’t perfect they sometimes have to try by trial and error I think we need to remember that. I’m on my way to National Jewish in a week haven’t been feeling good since June but I have every confidence I will be in the right hands. Just remember a little compassion goes a long way I have learned that having chronic lung disease. You never know what another person may be dealing with, so I make a point to be nice to everyone.

  2. […] you to all who submitted stories for the first round of questions in my previous post. Your responses were OUTSTANDING and I’m so excited to be including them in the manuscript. […]

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