MCSMN Blog

May 18, 2018

Redefining My Life’s Purpose…in a Recliner – Experts by Experience

By Shani Weber

Ever since I was a young girl I knew I wanted to be an Early Childhood Special Education teacher. My self-identity was being a teacher and my purpose was teaching.

My life was going as planned—until it wasn’t. Joint pain and dislocations became more frequent, I worked fewer and fewer hours, and my focus shifted to managing pain, healing joint injuries, and preventing new ones. I was losing my purpose in life—I was losing my self-identity.

The orthopedic specialists, physical therapists, my primary care provider, the pain management specialist I saw, worked hard to treat my physical symptoms, trying to increase joint stability to ease my pain. Yet, no doctor or physical therapist addressed my mental distress of losing who I was. Finally, I went to a geneticist and was diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS).

Hypermobile EDS, and all types of Ehlers-Danlos Syndromes (EDS), are genetic connective tissue disorders that can affect tendons, ligaments, skin, blood vessel walls, organ valves, the gastrointestinal system, fascia, eyeballs, teeth, and more. EDS can cause pain and problems in just about any part of the body and system. I could no longer teach or do many of my daily tasks.  My life switched from toy bags and staff meetings, to needing a recliner, braces, and a situational wheelchair. I went from having purpose, knowing who I was, to barely recognizing myself.

After much reflection I realized that teaching, at its most basic, is helping others and although disabled, I could still do that in my recliner with the help of a laptop. I could provide support and help others with Ehlers-Danlos Syndrome; I could help their doctors and caregivers learn more about types of EDS, and different ways to treat symptoms; I could live a life with the purpose of helping others with EDS live better.

I began by answering questions about EDS in an online support group. I also helped with questions from patients and doctors who would email the Ehlers-Danlos Society’s Helpline. I have spoken at conferences and advocated for EDS patients at the NIH, FDA, on Capitol Hill, and at my state capitol with the help of family members. Today I run an EDS support group which I co-founded in my state.

I still live with daily joint dislocations and use many tools, medicinal and non-medicinal, to manage my pain. My electric recliner, which has multiple support pillows and an electric blanket that serves as a giant heating pad, is where I spend most of my waking hours, helping others. And, my life has a purpose—I’m helping people every day.

I know that many people with EDS or other chronic illness struggle to find meaning and purpose in their life. My hope is that every person with chronic illness can find theirs, and that every doctor will remember that physically disabling conditions can also cause mental and emotional symptoms that make life so much harder. If doctors and other medical practitioners would screen patients for how they may be coping with a chronic illness and offer suggestions or literature that would help patients redefine their purpose in life, then they would be fully treating the whole patient. If a physician does not feel comfortable doing so, or has a patient who needs further intervention, they can still make a significant difference by connecting the patient with a mental health professional who is experienced in working with chronically ill people.

I feel fortunate to be able to continue my childhood pursuit of helping others, even though the definition of my purpose changed. I live with Hypermobile Ehlers-Danlos Syndrome (hEDS), and I live better knowing my life’s purpose is helping others who live with it too.

Experts by Experience is a collaboration between Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.

About the author: Shani Weber lives in Maryland with her amazing husband, wonderful children, and fuzzy dog. Shani’s recliner, where she helps people, is electric and has multiple supportive pillows with an electric blanket that serves as a giant heating pad. She is the local groups and outreach liaison and a helpline advisor with the Ehlers-Danlos Society.

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Tags: Ehlers-Danlos Syndrome, Experts by Experience, experts by experience, patient advocacy, Patient Involvement

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