The Chronically Awesome Foundation has roots in the movement began by Julianna Shapiro when she decided that there was no way she could “silo” her condition. She could not put herself in one box. It is hard to expect anyone with a chronic illness to find a single box to which belong. Oftentimes, when an individual receives a chronic illness diagnosis, they find that they have comorbidities, multiple chronic illnesses. Those that do not have more than one illness may develop other illnesses resulting from their first diagnosis.
You Are Not In A Box
Some people with a chronic condition develop depression or anxiety while others develop conditions closely related to their first diagnosis. For example, people with diabetes are twice as likely to have arthritis. You begin as a supporter of a diabetes foundation and when you later develop arthritis do you remain siloed in your support of diabetes causes? Do you spread your support across two causes? Or, perhaps there is another option.
Julianna, having already been diagnosed with Bipolar II since 1988 found herself facing a new and very different challenge. Spreading her attention, volunteer work and financial support across several groups and organizations was often too exhausting. Financially, this could become untenable.
With her experience in marketing and support for a software company, Julianna aka Jules (or WhatTheJules) knew something about working with people that had a common goal. Julianna helped thousands of people who were running a particular kind of business, but at any given time had varying needs when it came to running that business. In the morning, she could be training a customer about a feature in her company’s software, by the afternoon she could be helping another customer fix a printer. The next day Jules might find herself on the road training a group using the training materials she wrote. All the while, customers were posting questions and participating in discussions online about multiple topics, organized but with many boxes, on the company’s support site.
This business was not unlike working with patients who had many interests and various illnesses. Spending her time blogging and expressing her feelings about her journey through her life with chronic illness she realized that her work experience and her illness experience paralleled.She and some of her closest friends talked and decided that the same thing working with companies all over could work here in one place with bloggers, artists, writers, and creators of all kinds.
All-Inclusive, Positive, Creative
After talking to patients on twitter, Julianna reached nearly 5,000 followers who agreed; there has to be a way to talk about illnesses that were not only all-inclusive but positive, and creative. These were people, mostly at home, blogging and expressing feelings about their shared journey through with chronic illness all in one place with other bloggers, artists, writers, and creators of all kinds: The Internet. The Internet and Social Media, where patients do not have to leave the comfort of their homes to attend support groups, the support groups can come to them! The information about their illness, about ways to feel better living day-to-day can come to them. And, as rapidly as the information changes, the information can be sent to them!
We learned that at the core of all chronic illness we are faced with many of the same problems: a complete change in lifestyle, difficulty with work or finances, stigma, relationship challenges, seeking our diagnosis, and so much more. Most of us with chronic illness, no matter the illness, have much more in common than we realize. To silo illness, to separate illnesses out into their special boxes is not always necessary, nor is it productive. We have much to learn from each other. Why should we take divergent paths just because the illness listed on our chart is different?
One of the things we learned at the very beginning was that many of us with different illnesses were taking the same medications. There were several jumping off points. We also found that many of us were bloggers, crocheters, knitters, and painters. We discovered a way to feel better in creativity.
True Grassroots Movement
In 2009 Julianna began using #ChronicallyAwesome to self-identify, empower herself, and inspire chronically ill men and women across the nation. Now the Foundation has reached thousands of patients across the nation with its #chronicallyawesome twitter tag, Google Community, Facebook Chat Group, Blogging Community, and Chronic Chronicles podcasts. With no infrastructure or outside support, Chronically Awesome took off like a force of nature. It is a true grassroots movement founded by, run by and designed for members of the chronically awesome community. Meet our hard-working Advisory Board that makes our foundation possible.
Broaden, Build, Create, Give, Give Back
Now, as a fiscally sponsored foundation, the Chronically Awesome Foundation, with the help of your memberships and donations, can reach out and provide services to those who need support. Chronically Awesome is based the known benefits of creativity. The additive nature of Chronically Awesome not just a Chronically Awesome theory. Dr. Barbara Fredrickson’s work called “Broaden and Build” is the scientific basis for what we do. We do not wake up each morning and begin the count backward. We start the count forward. We build up what we can do. As we pace ourselves over days, weeks, months, we broaden and build our emotions and our lifestyle, and in so doing we become more resilient on both an emotional and cellular level. We are philanthropic. Working together to help chronically ill children in our partner hospitals and other health facilities by providing creative tools that are age appropriate. Whether we are shipping these tools or dropping them off so that we can work directly with the children, we are helping others which help us.
We Can Only Do This Together
There is so much to do, and we can only do what we do together. If we siloed ourselves, we would do so at great expense to ourselves and to those with whom we could be spreading our message of positivity, philanthropy, and creativity. By working together, we are daily taking the ill out of chronic illness and living our lives as Chronically Awesome.
If you are interested in donating to The Chronically Awesome Foundation, your tax-deductible gift will help to support our art kit program for Chronically Awesome Kids.
If you would like to volunteer your time or to submit your writing, photography, or artwork for this website, please email firstname.lastname@example.org. Your copyright always remains your own.