When invited to write a one-year commemorative post for Demos Health, I was asked if I might write about how my book, Business from Bed, was received or how my life has evolved. What came to mind are the women and men I’ve met in the year since the book was released – the everyday heroes who are determined to keep a business afloat even when a devastating illness creates deep weariness in the body and threatens their confidence. I would love to list them all here but there’s not enough room in the post. Instead, I’ll share the story of one such entrepreneur, Raffaella Tassone, the proud owner of an independent lingerie boutique in her hometown of Orillia in Ontario, Canada.

Raffaella first introduced herself to me on Twitter, shortly after picking up a copy of Business from Bed. Every once in a while she floated a tweet my way to keep me abreast of her progress and at some point we became friends on Facebook. Knowing, through her posts, how ill she is at times, I was inspired to share her story after learning that her shop was awarded Best Lingerie Store in Orillia in 2013. Rock on!

Here is her story…

The Illness and the Decline

After several years of exposure to dangerously high levels of black mold in the ceiling of her home, this usually energetic, positive woman became increasingly and visibly ill. Raffaella lost her luster, she lost a great deal of weight and became so ill that she often closed her small shop early, or never opened some days. The diagnoses: Sick Building Syndrome, Myalgic Encephalomyelitis (commonly known as Chronic Fatigue Syndrome), Chronic Obstructive Pulmonary Disease (COPD) and Pulmonary Fibrosis.

Starting sometime in 2007, Raff’s ability to keep the shop open diminished, and eventually customers started going elsewhere. She suffered a predictable crisis of confidence. Remembering the woman she used to be, the woman who could work 60 hours a week and still have energy for the gym and socializing, it was hard to accept that she could barely work 18 hours a week. When her sister-in-law offered to help out she agreed, although reluctantly. Even though hers is a public shop she offers an intimate service. Her clientele wanted to see her.

    I no longer work six days a week and I haven't since 2007. I am scheduled to be on site at my business 3 business days a week while the other 4 days I am off...resting and rebuilding my quality of life. I require this rest to give me enough energy for my 18-hour work week at my store; otherwise I may not be able to even work those miniscule hours.

    When I do open....it usually takes me an hour to get up enough energy to be somewhat productive. I am typically sitting at my desk doing computer work until I muster up enough energy to get my day going. If I am fortunate enough to have acquired some energy, I continue to keep my energy exertion at a minimum and am sitting the entire day, in between bra-fittings and working with my customers as they come in. So, even though I am "at work"....I am usually sitting down not being the once super productive girl that I once was. I do what can, when I can, how I can.

    The same goes with closing time. If I am so tired that I cannot wait until 5:30 to close my store...I will close whenever my body tells me to. I have learned not to ignore the signals that my body dictates to me. It governs my life.

Breathe and Believe

Warriors look for the silver lining in the most difficult life events. Raffaella is no exception. To close I share her message for you:

    Breathe and believe. Have faith in all you do. Find the proper support systems to help you navigate through your chronic sickness. Find solace in every positive thing in your life, no matter how big or how small. Don't blame yourself for being sick. Don't be embarrassed. Don't hide from the world. Don’t feel bad when others don’t understand the complexities that you are faced with every day. Own your sickness even if you don’t “look” sick. Work with the good within yourself. Love yourself unconditionally. Stay strong and never give up…on the inside.

The stigma around illness, as misguided as it is, remains. I am deeply grateful to those, like Raffaella, who have come forth to say hello to me, and are open to sharing their journey with others. These are the everyday heroes that I have had the good fortune to meet while, and since, writing Business from Bed.