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© 2015
Communitas

Invisible Illnesses

My name is Lily, and I have had Juvenile Arthritis since I was a toddler.

For the past 18 years, I have watched the power of medicine– from rheumatology appointments to x-rays and MRIs, drug infusions to surgical procedures, or physical therapy to nonprofit philanthropies. I’ve watched it all happen around me, and it became my “normal”.

I joined the Communitas family a year ago, and have learned that healing stems not only from drugs and science, but also mindfulness and meditation. This program is incredibly impactful, and I am excited to see how it affects this current group of young adults and parents.

Many of us who participate in the Communitas program can relate to the feeling of hidden suffering. While we may be young and seemingly carefree, we are battling numerous chronic illnesses, and have learned to mask the pain.

For my first blog post, I have decided to focus on the topic of our daily lives, and how much we are impacted by our disabilities. Hopefully, this will not only help you feel less alone in your struggles, but it will also help others gain insight into the world of invisible illnesses.

Attached is a short poem I wrote to reflect my feelings of frustration. I encourage all of you to keep a journal and write down everything that is going on in your life…It can be incredibly healing.

♢♢♢

03/17/2016.

Today, I woke up in a flare.

            I lift my arms up over my head, slowly, anticipating even the smallest movement to cause a chain reaction of pain. Swinging my legs out from my cocoon of warmth, I feel my knees swell from the pressure of motion.

            Today, I am in a flare.

            Act normal. Say hello, walk in a straight line. Keep your gaze straightforward; the neck stiffness is making it difficult to look around. I feel my right hip joint buckle unnaturally, a dull ache that demands attention. Now limping, a young athlete hollers to move out of his path. I grant forgiveness for his rude attitude—my illness is invisible. He didn’t know better. He is entitled.

            During work, I am in a flare.

            Standing on my feet for hours. My back begins to heat up—I know it’s not happy with me. It begs me for a ten-minute break, which is an hour away. Act normal, smile at customers. Massage your shoulders at every opportunity. An elderly woman comments that rain is aggravating her rheumatism. I wink and strongly empathize. She gives me a cold look and proceeds to lecture me on the trials and tribulations of aging. Her advice: live while you’re young. I provide her with jasmine green tea and she exits. The day stretches on.

            At the party, I am in a flare.

            Social occasions. I promised my friend that I would be there; it would break her heart if I had to cancel…again. I look around for an escape route. As always, I am surrounded by happy, healthy people who have little to worry about. By now, all 360 joints in my body are swollen, tired, and ready to give up. Act normal, be friendly.

            Tonight, I am in a flare.

            I waddle home, carrying a ten-pound backpack. Gently, I untie my shoes and run a bath. I soak for hours, waiting for some relief that I know is far away, unattainable. I crawl back into bed, knowing I have to wake in six hours to repeat it all over again.

            Tomorrow, I will wake up in a flare.

♢♢♢

I wish you all well in the next coming weeks. It is the season for sneezing and head colds, so take care of yourselves.

-Lil

April 25th, 2016//By //

Welcome to the Communitas website and blog!  I hope this site serves as a resource for young people facing chronic illness and their families.

Through my personal and professional experiences, I have come to see serious and chronic illness as a turning point for patients and families. With that in mind, I have had a long-standing vision to establish Communitas, a program for young people with serious chronic illness and their families to come together to heal and explore what really matters.

I have been on a path to create Communitas ever since I lost my mother to cancer during high school. My journey with my mother through her 3-year experience with cancer taught me about what is at stake for patients and their families and what it is like to live with the ups and downs of chronic illness. It inspired me to become a doctor who puts the patient’s and family’s values and experiences first and to strive for a kind of medicine that helps people not only heal, but thrive. As I journeyed with my mother through her battle with cancer, I saw first-hand the healing powers of a holistic approach to health that involves engaging with self-care and mind-body techniques, nourishing the body through healthy nutrition, reducing stress, spending time in the natural environment, and connecting with a supportive illness community.

My mother’s life ended far too soon, but I have made it my mission to carry the torch my mother lit for me and bring communities together around serious illness, expand their conceptions of healing, and help lift people up in the face of adversity. I believe that given the right environment, community, and tools, adversity can be the thing that transforms a life and family in a positive way. With this in mind, I envision a new healing model in Communitas that brings people together and helps families re-orient their lives in a positive way moving forward from illness.

My long-term vision is that Communitas would evolve over the next 1-2 years to become both an outpatient day-program and a long-weekend retreat program hosted in a natural environment for young people with chronic and life-threatening illness and their families. I look forward to partnering with others to make this dream a reality.

 

 

March 9th, 2016//By //

Coming Soon!

Thanks for visiting our site. We will be adding new content to the blog in the coming days.

November 4th, 2015//By //