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Silent Illnesses: How to Explain it to Others and Find the Support That’s Right for You

Modern biomedicine is rife with dilemma. Cells and DNA, hormones, lesions and blood counts are agents of the biomedical diagnosis that often explain a condition as if it were analyzed outside of the patient’s body—like a weed that can be uprooted before it begins to envelop the garden. Yet illnesses are not just pathological processes to be understood and explained solely through the lens of a microscope or the language of science.

In “Living With a Hidden Illness,”Alison Potts describes the pain of hiding her Multiple Sclerosis, an autoimmune condition, which has caused her to feel like she has a permanent case of the flu and tainted her memory, arresting her paramount passion for writing. But because these symptoms are hidden, Potts is frequently probed about the reality of her condition.

In “The Spoon Theory,” Christine Miserandino recalls an instance when she used 12 spoons to explain to a friend what life is like living with Lupus, a chronic autoimmune disease that often causes extreme fatigue, headaches, anemia and chronic pain. Christina’s spoon theory sprung from her struggle to find the right words:

“I quickly grabbed every spoon on the table…I explained that the difference between being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.”

After Christina gave her friend 12 spoons, she then broke down every daily task that drains her energy (a spoon), like showering, brushing her teeth and putting her clothes on. Six spoons were gone before her friend had even theoretically left for work. Christina’s story suggests that perhaps when language fails there may be other ways of sharing what life is like living with an invisible illness.

Last year I got to know a charming seven-year-old named Gwendolyn who has Mitochondrial Disease. Like Christina, Gwen’s energy is limited and wanes with movement. I wrote an article about her in which Kim, Gwen’s mother, says she wishes she could hand out the lessons of her daughter’s disease on a silver platter:

“Going to the beach requires an entire day of preparation: scheduling her meds so that she’ll be unhooked from her IV for two hours, taping up her chest, having to do a painful dressing change afterwards, carrying all her supplies, bringing a nurse. All for the joy of those two hours. It’s all worth it. It makes every time you do something so utterly powerful.”

For Kim solace has come from sharing her daughter’s story. In 2006 she became President of MitoAction, a grassroots organization dedicated to educate and advocate for families living with Mitochondrial Disease.

While the journey is tough, there are resources and support available to individuals, and families, affected with silent illnesses:

  • When words fail, symbols or images can help with explanations: “spoon theory” or “a vacant lot
  • If you can’t tell everyone, try finding one trustworthy friend or family member with whom to share your experience
  • Look for a community like WEGO Health to meet others who share your condition
  • Try writing a “dear disease” letter, like the Dystonia community did, to express your feelings, thoughts and frustrations

These are just a few ideas to help, but no matter what diagnosis a person is given, nothing is black and white and there are thousands of different ways people learn to live with hidden illness. Please share your thoughts on how you have learned or are learning to live with your health condition and tailor strategies to your personal needs!

Written by Haley Newman, WEGO Health Intern. Haley Newman is a Community Health and Asian Studies Major at Tufts University. She aspires to someday become a caring physician and anthropologist. For fun Haley enjoys running by the ocean, yoga, guitar, photography, reading, writing, sushi and listening to people tell stories.

2 thoughts on “Silent Illnesses: How to Explain it to Others and Find the Support That’s Right for You

  1. I love The Spoon Theory!

    I live with Migraines, Fibromyalgia, chemical sensitivities, sleep apnea, etc., so I know all about hidden illness. I posted "Understanding Invisible Illnesses" on my blog jasmine's cove recently. Feel free to click my name if you'd like to read more.

  2. I like the idea of the "dear disease" letter. (Although I don't know if I'd say "dear".)

    Having been relatively newly diagnosed with Fibromyalgia (1+ year now), I'm having a hard time balancing between educating the people I know and their feeling that it's TMI or that I'm whining all the time. Blogging helps me put it all out there without directly beating them over the head with my challenges, frustrations, and problems. If they want to, they can check up on me at the blog.

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