On Wednesday, my social media messenger played a happy sound announcing a private message from a high school friend I had not seen in years. I had recently posted a picture of myself, in a massage chair, trying to work my way through an incredible pain flare while I was unable to get to my physician in another state.
Initially, I was comforted and felt loved by her message. Those feelings quickly turned to anger when I noticed she asked if I had tried a juice cocktail, which she sold, to cure my chronic pain etc. The messages continued to come in, paragraphs of unsolicited miracles until I could stand it no more. I asked someone for advice, which I took, and snapped a photo of my rose gold-colored magnesium wheelchair, asking, “will it fix this?” I hope she got the message.
Social media is designed for us to share all of our latest endeavors. From cliche salad photos on Instagram to the latest Whole 30 diet that has changed your life, many of us want to tell the world about everything we do that makes us better humans. Some of these items and activities are things we participate in for fun and others are part of our business structure. Oils, shakes and leggings; your social media feed has them all.
That is why it should be no surprise that the increasing prevalence of social media influence, coupled with the extended amount of time we spend online, makes it a perfect storm for well-meaning friends to bombard you with the latest and greatest thing that cured their aunt’s sister’s cousin’s babysitter.
If you are like me and have a chronic illness, you have likely been offered unsolicited advice in real life from friends and family that love you and want nothing but the best for you. As the unattributed joke goes: “If you say chronic illness into the mirror three times, someone will appear and tell you to do yoga.”
Some of the products, services, diets and activities presented can be excellent options for the right person and situation. As a CrossFit coach, I am often quick to share that many disabled individuals can do CrossFit effectively and efficiently in a safe environment. While I usually only share that information if asked, many friends are so excited to share their ideas that they forget the language and insistence they use devalues the chronically ill and disabled experience on many different levels, attributing serious and life-limiting issues to a simple lack of juice, herbs or lifestyle changes.
While this article will probably mostly be read by individuals who have been on the receiving end of unsolicited advice, I strongly encourage you to share it with your able-bodied and neurotypical networks. All too often we sit silently as our friends tell us about the latest in essential oils that will cure a genetic disorder they can’t even pronounce. While we may endure this for the sake of friendships, I believe we, as lifelong inhabitants of this chronically ill space, owe it to our visitors to help them culturally navigate our world.
I have a genetic disorder known as Ehlers-Danlos syndrome, as well as an acquired incomplete spinal cord/nerve injury at L4 and L5 due to a fall. No amount of juice or essential oils will change the defect in my DNA. Ingesting the latest collagen you saw at the local grocery store will not either. And yoga most certainly will not fix a disorder that causes extreme flexibility and dislocations due to lack of structure in our tendons and ligaments. If anything, such a suggestion could dislocate my joints, requiring a hospital visit and causing permanent damage to the associated nerves and blood vessels.
So to you, friends, family, coworkers and the random woman at the drug store I am trying to avoid by putting in my headphones without any music, if you want to help us: don’t. Don’t offer unsolicited advice to us without first inquiring. That is not to say you cannot appropriately share the things you are doing in your life and your excitement for their success. We want you to live your best life. But there is a solid wall between sharing what is working for you and insulting me by suggesting you hold the miracle cure world-renowned physicians have failed to find.
Disability and chronic illness bring a unique culture many of us as members of those groups come to embrace, for better or worse. Given the different stages and outcomes we face, some of us have mourned the loss of our former selves and come to a place of acceptance and peace. Suggesting that we do not do enough yoga, exercise or eat enough vegetables is insulting and devalues the part of our lives we are unable to change due to disease progression, accident or genetics.
Such behavior also indicates that you have not truly put our friendship first and don’t truly understand what we go through on a daily basis. If you did, you would clearly see the multitude of new medications, treatments, therapies and other things we post about at 2:00 a.m. when we are unable to sleep due to mounting pain or worry.
This concept can be difficult to understand at first. How is caring and sharing wrong? What does it mean to “give up” searching for an answer? These are hard questions with answers that are unique to each individual. But ultimately, it comes down to respect for the individual with the health condition, as well as a firm understanding of what their condition entails. Not all problems are fixable. ALS is not something we can solve. No amount of oil will repair brain lesions. Some people do not want a cure for their disabilities and are happy as they are.
Seek to understand health conditions and their scientific limitations before thrusting that information upon someone else. Channel the frustration you felt when someone told you how to parent, or how to do something when you were really doing the best you could.
My spoonies, be strong and cease being silent. Be a voice and an advocate for the community who supports you, understands you and knows yoga can be beneficial, but for other reasons.