11:00 - 11:45 amSunday, September 7
LK 102
Unmasking invisible illness: What does pain look like?
LK 102
Unmasking invisible illness: What does pain look like?
ePatient Scholar; Program Analyst and Chronic Illness Advocate
ePatient Delegate
Virtual Panelist
ePatient Scholar; Paramedic
ePatient Scholar; Founder, Chronic Curve
Unmasking Invisible Illness: What does pain look like?Watching the 2013 MedX ePatient panel, I was struck by the gasps from the audience when Emily Bradley disclosed her current pain level was a 9 on the... Read more


Unmasking Invisible Illness: What does pain look like?

Watching the 2013 MedX ePatient panel, I was struck by the gasps from the audience when Emily Bradley disclosed her current pain level was a 9 on the 10 point scale. Dressed in business attire, with professionally done hair and makeup, Emily simply didn’t look sick. As a young woman who has spent 20 years doing her best to “pass” as healthy in professional and social situations, this incident resonated with me strongly. This panel discussion will provide a visual reference for health care professionals, students, caregivers, and even patients, to better understand what pain does and does not look like. It is my hope that better education on this important issue will improve the quality of care that patients in pain receive from medical professionals. Instead of being treated as drug seekers because they report high pain levels, but are then seen laughing or smiling, or because their outward appearance (manner of dress, makeup, etc.) is carefully calibrated to mask their symptoms, medical professionals will recognize that years of dealing with severe discomfort has resulted in a higher tolerance for and ability to conceal true pain.

The presentation will first discuss pre-existing biases about invisible disabilities, in general. (For instance: What do medical student see when they are introduced to patients? A person in a paper gown, or a professional in business attire?)

It will then present a curated discussion of pain levels among Medicine X ePatients. This part of the discussion will summarize overall conclusions about ePatients, their narrative, and their illness. It will ask participants: what associations can be drawn from the photos and the pain levels (do patients make more of an effort to look good when their pain is worse? At what point do they give up on their outward appearance?) It will also address what people (“healthy” people or medical professionals) see in the ePatient photos – does this change when they read the patient’s bio? Is it possible for people to accurately guess the pain number associated with each photo?

Finally, a panel involving self-tracking ePatients will discuss what the ePatients learned about themselves and the healthcare system from this self-tracking. What challenges did the tracking pose – emotionally and practically? Can conclusions be drawn about ePatients as a whole from this tracking? 

Desired outcomes:

  • Educate doctors, health care professionals, and medical students about the lived experience of invisible illnesses, such as chronic pain
  • Increase awareness that pain, chronic pain, and other invisible illnesses are real, even if patients look okay; such patients are not "drug seekers"
  • Show the level of work and coordination that being a patient can require
  • Initiate a discussion of ways to better portray the experience of pain to healthcare providers

Carly Medosch has been living with Crohn's disease for 20 years and with fibromyalgia for one year. She spent many years too sick to do much beyond essentials. Now, still not in remission, she has earned a BFA in graphic design and MBA, run a local IBD support group, managed a Facebook group, curated sickhacks.tumblr.com, and written about chronic illness at blog.chronicarly.com. Carly is passionate about breaking down silos between patient communities so we can share knowledge, support and increase our advocacy power. Based in Washington, DC, she is excited to expand my opportunities to advocate and partner with health care professionals and designers.

Scott Strange has been a Type 1 diabetic since 1970. Strangely Diabetic is his story of how diabetes has affected his life and how his life was changed when he learned that he wasn’t alone in this chronic condition. Scott wants to share his experiences with other diabetics, so they can hopefully avoid some of the things that made him truly suffer.  Diabetes was probably the least of those things.

He advocates for patients to become actively engaged, not only in managing their condition, but in stepping forward to lead their healthcare team and to communicate with others either online or in person.

It took him nearly 40 years to realize that he was not alone in living with diabetes. At the time, Scott didn't even know that he needed the support of other diabetics who truly understand, but he finally found the support he needed and it has changed his life.

Blogging and participating in the Diabetic Online Community is Scott's way of giving a little back to all those who have helped him.

Summer Plum was a massage therapist and tea blender until illness required she close business. Now she is a professional patient working full time to manage and share the experience of chronic illness, hoping to help others with honesty & compassion. She has been called a "food and happiness enabler" because of her creative insistence on delicious living despite extensive dietary restrictions and physical limitations from Ehlers-Danlos, Depression, Anxiety, Autoimmune Hepatitis, Fibromyalgia, IBS, and more (she currently has 28 active diagnoses). Summer sometimes blogs at summerplum.com and can usually be found tweeting as @summerplum, and also contributes to @sickhacks & @gimpsexyus. 

Joe Riffe is also known as the Prosthetic Medic. He literally fell into his role as an ePatient and amputee activist when he fell 110 ft off of a waterfall. After several surgeries to save his limb, Joe was told that his only option was to have the knee and ankle fused. He refused, fired that doctor, and voluntarily had his left leg amputated above the knee in January 2012. 

Since then, Joe has been on the ePatient Honor Roll; spoken to the Kentucky House of Representatives; and is currently petitioning the President to push Prosthetic Insurance Fairness nationally.

Emily Bradley didn't knowingly enter the world of patient advocacy when she started her website, Chronic Curve, back in 2010. What started as a personal outlet has grown into a community for other adults with chronic diseases and chronic pain; specifically types of autoimmune arthritis and auto inflammatory diseases.

Patient advocacy—especially in the context of social media outreach—has really only just started to establish its place in health care. The growth of Chronic Curve has nurtured an incredible passion for improving the doctor-patient relationship and utilizing social media as a tool to connect patients with their clinicians, improve communication, and break through the stigma of chronic pain and chronic pain management. While Emily brings many ideas, a unique perspective, and her own personal experiences to the table, she wants to learn how to better build a bridge between patients and their physicians and grow as a more effective patient advocate.

Emily hopes to share and brainstorm ideas with others; create lasting connections with fellow attendees; better understand the field of patient advocacy and innovation as a whole; and gain fresh perspectives from individuals with far more knowledge and experience than herself. ePatients are far more powerful when they come together for the cause, and it is community that advances awareness, funding, innovation, and ultimately success in improving patient care. She hopes to gain insight into how others work to improve the doctor-patient relationship, how other patients in different advocacy communities are sharing information with their physicians, and gain outside perspectives on patients and issues like chronic pain management and patient care.

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