We often wonder at SNJ, as we all must, how our children with chronic illness, rare conditions or additional needs will cope when they are adults. How will their difficulties affect the way they manage their lives? SNJ Columnist, Robert P of RareConnect, the home of many rare diseases social communities, has some inspiring news...
"The fact of having endured and survived such trauma had a liberating effect. These are people who are able to break the frame of the known world-what's believed, what's assumed, what's common sense, what's familiar, what everyone takes for granted, whether it's about cancer or the laws of physics. They are not confined to the frame. They have the ability to step outside it, because I think the usual frame of childhood didn't exist for them. It was shattered."
-Psychiatrist Peter Mezan in David and Goliath: Underdogs, Misfits and the Art of Battling Giants by Malcolm Gladwell
In my role as online community manager of the rare disease social networks on RareConnect, I communicate with people living with a rare disease every day. Each person's situation is unique, but through meeting other patients online, the isolation of living with a rare disease is lessened.
I recently encountered someone who inspires me. Though born with spinal muscular atrophy, a form of muscular dystrophy, Li* has overcome disability to become strong and driven despite her early challenges. Living with a rare disease can defeat even the strongest at times, but it is in the reaction to those challenges, people like Li, are made more resilient, sensitive to the needs of others and driven to lead a life that gives back to others.
Li was born in Beijing, where disability is viewed as a sin by some, and the human rights of people living with a disability are routinely ignored. She describes early life and visiting many hospitals throughout the city as "a battle". Various doctors tried to cure her physical developmental issues, but naturally failed as spinal muscular atrophy is a degenerative disease. Li was subjected to much physical and emotional pain at the hands of those doctors. She was denied access to schools at first and begged to be allowed to get an education. Her school years were full of isolation and exclusion.
Instead of being defeated, these early experiences made Li driven to help others who are living with conditions that present similar barriers. Li isn’t the kind of person that takes the word “No” very easily. She never stopped pursuing education and was accepted in to University of California, Los Angeles, becoming the first college student in her family. She left home, now using an powered wheelchair, and studied education at UCLA. She returned to China after graduating and now works on patient advocacy projects at the Chinese Organization for Rare Diseases. She wants to go back to school to study international development.
Everything that I assumed would make a person weak or broken, like growing up as a wheelchair user in China, in fact makes Li the strong, empathetic person she is today. There is a theory called “desirable difficulty” that says what some would view as a disadvantage in life (disability, rare disease) can in fact have desirable effects on a person’s development. While Li’s physical body struggled with muscle problems, her mind, emotional intelligence, and determination to do good for others flourished.
Maybe we need to examine that side of the paradigm a bit more: disability can sometimes not be all bad. Where would Li be today if she hadn’t been born with a rare disease? Would she still be working at an advocacy organization? Would she have had such an impact on so many other patients’ lives?
Li is an inspiring reminder to me that we can all turn our struggles, pain, and disadvantages in life more in our favour and try to live as compassionate people. I’m grateful that my days involve reading meaningful personal accounts from others living with a rare disease in the communities on RareConnect. Maybe we can find a silver lining in rare diseases after all.
- *Li is not her real name.
- If you are interested in the theory of desirable difficulty and want to read more, check out Malcolm Gladwell, David and Goliath: Underdogs, Misfits and the Art of Battling Giants
- Join the discussions that are connecting the rarest of rare diseases - September 16, 2016
- The pain of finding acceptance with Apert syndrome, a facial difference - September 26, 2014
- How Jonah’s parents are connecting families with his rare disease -and how you can too - May 23, 2014