Blog Carnival at Partnership for Palliative Care: Why is sharing our health experiences necessary?

In the late 90’s, I began my graduate program at the same time I received my diagnosis of lupus nephritis. As both of these events collided, I discovered how my life and my health experience were tightly woven together. This simple understanding about the relationship between body and mind can quickly unravel when faced with fear, barriers and shame.

When I received my diagnosis, I learned how I cope with life and the particular strategies upon which I rely. My doctor suggested that I join a support group and I immediately responded with a “No thanks.” This surprise reaction to a standard recommendation led me to explore coping styles and strategies among women living with SLE (systemic lupus erythematosus). What came out of this study is what I want to address in my post.

Before Facebook, Twitter, blogging and other social media platforms were widely available and utilized, there was journaling, conversation and withheld emotions. Support groups were scattered and some people attended, but there were a silent majority who didn’t feel that discussing something as private as their health was beneficial towards their healing or cure. There was an understanding that sharing their health challenges brought the potential for loss of jobs, insurance coverage, relationships of all types and hope.

As the use of and options in using the internet began to unfold, the strategies in coping with health challenges became more varied and promising. For those who either didn’t have a local support group available or were uncomfortable with face-to-face interactions, the option to communicate with others sharing their specific health experiences in a more perceived anonymous or shielded manner was truly a door towards their personal healing. For those relying more on problem-focused strategies in dealing with stressors, the access to information, tools, programs and services gave them the foundation they were looking for. Finally and, as shown in my research, most importantly, the internet offered the chance to put out their personal beacon to find others and develop relationships that did not require having to explain, justify or hide the fact that they were living with a condition that threatened the other relationships in their lives.

Fast forward to the recent controversy spoken by others who feel using the internet to share personal experiences can be excessive.

I’m certain that the responses to the expressed frustration and judgments about those of us who use the internet as a medium for expression will include personal rights and freedoms available in this country; common sense comments such as “Then change the channel”; needs for patient advocacy in furthering health research, and appeals to compassion by sharing footwear while walking along the chronic disease path along with us.


I want to say this:


As humans who are designed physically, cognitively and emotionally to face adversity in survival, it requires innovation. To suggest that one person’s strategy in finding what works for them in coping with their challenges somehow has a limit, chain of command or due process is barbaric in today’s world. Whether it is health concerns or political unrest, this world’s population doesn’t evolve unless something is shared. We got here through oral traditions and, because we are using a platform that reaches the world as opposed to just those sitting around the fire, it is a vital part of history.


The beauty of the internet is personal choice in what we put out there or take in. Although there are important considerations when opening up our lives so broadly, the right to choose our strategies and risks apply to any side of the health experience exchange. And, as research in coping with stress has shown, the more strategies we use individually improves our ability to find balance in adversity. The difference today is that we are no longer acting on an individual scale – now it is a global one.

Each person has their part and needs to work through things for themselves. However, we are now relying more than ever on each individual’s part as it plays in a much broader experience.

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:Haha! I'am the first! Yeh~

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