In the United States alone there are 133 million people who have at least one chronic illness. That’s roughly 45% of the population. This number is the leading driver in the nation’s 3.3 trillion dollar annual health insurance costs. Six in ten people live with one chronic illness. Four in ten live with two or more. Illnesses that don’t allow them to lead what most consider to be a normal life. Illnesses that causes them to become shut-ins, bed-ridden, alone in the world.
For these people the illness itself is terrible but added to that is the fact that most of them have no idea what is causing their bodies to rebel and fall apart. There are hundreds of visits to the doctor, thousands of hours spent being tested, giving blood, scrolling through stories online just to figure out what the illness is that has changed their lives completely.
Some are misdiagnosed, some are told it’s all in their heads. Some hear doctors say: We just have no idea but we’ll keep looking. For most, the news is disheartening at best, leaving them feeling confused, lost and even ignored in the world. For almost all chronic illness sufferers the worst thing they can hear is: “You don’t look sick.”
The truth of chronic illness is that it usually has no outward appearance. The patient suffers inside a body that looks healthy but is really in full mutiny causing pain and sapping their stores of energy. For a long time this dichotomy of a seemingly healthy exterior coupled with inner pain and destruction caused chronic illness sufferers feel disconnected, ignored and isolated in the world. With no way to explain to people that despite their healthy looking exterior they really were sick, chronic illness sufferers often fell into depression and hopelessness.
Things changed drastically in 2003 when Christine Miserandino, an award-winning blogger and patient advocate, wrote an essay about how she tried to explain what living with Lupus was like to her friend. The conversation was prompted by her friend’s inquiry: What is like to be you, to be sick? Miserando took a handful of spoons and laid them on a table. She then told her friend that the spoons represented how much energy she had to do daily activities. Each activity cost her a spoon. Getting up she used a spoon, taking a shower, getting dressed, making breakfast. All these activities that most of us do without much thought, she had to think about and ration her energy, her spoons, so she could make it through a full day’s activity.
Miserandino’s metaphor was clear and universal. Chronic illness sufferers finally had an image, a vocabulary for talking about their lives, their struggles to those who said “You don’t look sick.” The chronic illness world embraced her metaphor and adopted the name “spoonies” as a unifying term.
It may seem small to those who don’t suffer a chronic illness however, for those in the spoonie community, it was a game changer. Spoonies say that the name gives them an identity and a strength. They further assert the term has helped them acknowledge their illness, feel less alone and affirm that they deserve access to medical treatment that can ease their suffering. The unifying of chronic illness sufferers and the adoption of the name spoonies has caused insurance companies to rethink their usual approach of “you need to prove to us you’re sick because you don’t appear sick to us.” Doctors are taking the complaints of chronic illness sufferers more seriously.
Up to the point of Miserandino writing her essay and introducing the world to the term spoonie, chronic illness sufferers felt invisible. Their sickness caused them to be more and more isolated. Eventually, even close friends stop calling and inviting them out on activities, adding to the feeling of isolation and loss. With the name spoonies came the community of spoonies. A group of people who understand, support and communicate with each other with knowledge and care that comes from a deep personal understanding.
Now there are many online communities that speak of being spoonie strong, share help when someone has used up all their spoons and support each other when they feel that going on will cost more spoons than it’s worth. Spoonies have a voice, a community and a presence in the world. Simple understanding. Simple connection. A unifying vocabulary has given those with chronic illness a voice and a place that they didn’t have before.
IVYE is a part and a force in this spoonie community. IVYE and its ambassadors are seeking to help spoonies regain control, find comfort and rediscover the dignity that is often stripped from them by a thoughtless, careless healthcare system that has often seen them not as people but a vessel of illness.