All of Me

I have been segmented, subdivided and otherwise dissected by the medical establishment, and as a human being I’m not quite sure how I feel about this. I do have this need for people to see the whole me—or as Frank Sinatra once sang, “All of me. Why not take all of me?”

Instead, pieces and parts of me are seen through the distinctive lens of my cardiologist, endocrinologist, therapist, rheumatologist, dermatologist, family practitioner, neurologist and numerous nurse practitioners, altogether I see 16 terrific professionals all of which I regularly recommend to others and all of which are interested in giving me good medical advice.

Doctors

Granted, visits to my doctors are quick and Joe Friday efficient—so I can’t complain that they aren’t getting their job done—but rarely does anyone take the time to ask about me. The endocrinologist who treats my type 1 diabetes never asks how I feel when others are eating ice cream, my blood sugar is soaring and I cannot bring myself to even look at the treat. The neurologist never asks how I stand it when my hands hurt, my feet are swollen or my vision is blurry yet it is a sunny day and the park beacons. The ENT is never concerned with my mental health. She never asks how the family is doing, how I am dealing with stress or if my heart surgery was effective.

The truth is none of my doctors really want to talk to me. Okay, perhaps one or two will listen to me talk about how I love to ride my bicycle, but none of my doctors know that I despise wearing a device on my belt that looks like a 1970’s pager with a tube running out of it. Nor do my doctors know that I sometimes tell people I walk with a limp because I have an old football injury because it is easier for a middle aged male to explain than having rheumatoid arthritis.

My doctors do not know these things—not even my therapist. Sure, I talk to my therapist, but not about my health issues even when something like diabetes burn out impacts my family. Even with her, I am plugged into her mental health specialties: depression, anxiety and fear. Whenever I broach a medical subject her response starts with, “I am not a doctor,” code for you need to make an appointment with someone else.

Understanding

Thing is, I understand that all the medical professionals in my life do not want to step over the line of their specialty. Still, I was always hopeful that someone, somewhere, would see all of me.

It was my overwhelming desire to find a place to talk about the whole me that led me to online medically oriented social media sites. I had always heard about the openness of these communities, but in 2006 the idea seemed ill advised. I sampled a few and none seemed right. Then one day I found TUDiabetes.org. After 32 years of being a person with type 1 diabetes, I found a place where I could both give and get support from others who understood.

Granted, my first steps were tentative. I read most of the posts and then at a glacial pace I started to comment and share. Soon I found that TUDiabetes.org was a place where I could talk about it all: my dislike of being a person with diabetes, and my fear of complications and the wish that someday my grandchildren will not have to suffer with diabetes.

Social Media

I found that I was not alone in my feelings of alienation. There were so many others battling the same issue of not being heard and not being recognized as a whole person. TUDiabetes.org became my go to place to share what works, talk about what does not, and laugh about it all. It was a revelation to me that I could give back to the diabetes community and receive so much in return.

In that atmosphere of sharing and caring I discovered a passion to write. Not just short little replies and comments, but longer, more heartfelt essays about living with diabetes, and living in general. In 2013 I set a goal to write 200 blogs in one year. It was a difficult goal to meet. I had to dig deep and bear my life experiences. I was also shy about sharing my writing because of my chunky sentence structure and choppy thoughts. I worried how the diabetes community would react to my blogs.

The feedback I received was invigorating. As I wrote the blogs, I found a new inner strength to express myself about a number of issues. My wife says she has learned more about me as a blogger than she had in the previous 38 years of our marriage. In social media I found a way to voice my feelings about things that had happened in my life and about more hopes for the future—talk about the whole of me.

Communities

I was diagnosed with Type 1 diabetes at 17 years of age and rheumatoid arthritis in 2000 when I was 43. In 2014, I decided to look for an RA community where I could express my thoughts. I came across passionate bloggers who had their own websites, but not one single place or community. Then I found CreakyJoints.org.

CreakyJoints.org not only had the largest group of patient bloggers on arthritis in the world but the blogs were well-developed personal narrative essays that were professionally edited. CreakyJoints features both patient bloggers like myself who are not working writers as well as patient bloggers who are professional health writers, authors and journalists.

I started writing blogs on CreakyJoints in January 2015 and have continued every month since. Based on the positive reaction I received, I felt comfortable enough to start a new and very different venture: RADiabetes.com, a website dedicated to great writing about RA and Diabetes issues. I believe it may be the first and only web site that addresses two chronic diseases. Writing about the two diseases in one place helps point out how disease overlaps and conditions impact each other.

It took 35 years for me to share my thoughts publicly about disease. Even today my thoughts and feelings on living with chronic diseases are often very painful to talk about, but I love telling my personal story because when you get down to it, everyone wants to be heard. And sometimes through writing I find humor in my life. And sometimes, even high hopes: So any time you’re gettin’ low ‘Stead of lettin’ go, just remember that ant. Oops there goes another rubber tree plant.”

Sing it, Frank.

-30-

rick

Note:  This was my entry for the fall issue of (Intima: The journal of narrative medicine) at Columbia University.  I did not make it, but it got close.  I hope you enjoy the article and  I hope you check out, Intima for those of us who blog it is cool journal dedicated to writing about health care. The next round of submissions will occur in two months for the winter publication.