Matters of the spirit

At age 36, I was hammered by heart failure. I went online in 1996 to find out more about my illness but there were no web sites about it - so I created one. Recently some doctors have hinted that there is too much "religion" on this web site for them to be associated with it. Here is my reply:

I have a chronic illness. I built a web site around my experience living with that illness, and the site strikes a chord with heart failure patients everywhere. I don't treat patients - I help people cope with illness. That means helping people educate themselves about the illness and its treatments.

However, education and medical treatment alone do not completely address the needs of CHFers trying to cope with lives forever changed. Sense of belonging, support, change in career and hobbies, questions that strike people whose mortality suddenly becomes real to them - these issues are not addressed with drugs or surgeries, herbs or devices.

No company or doctor can address all these issues the way a fellow CHFer can, who has faced the same questions and issues. I face these issues from the same perspective as the thousands of readers who visit my site.

My responses to these issues are not every man's responses, perhaps not even most men's response. However, having the person "in charge" bring up or address those topics gives people courage to openly address them here. I open a door - people choose whether to walk through it or not.

Although each person may choose a different way to cope with emotional, psychological, and spiritual issues, bringing such issues out in front of the chronically ill community and giving them appropriate weight benefits many of us, regardless of religion.

The passions stirred by bringing up such issues may be unpleasant to the detached observer, and may offend some people who would rather remain aloof. However, those very passions remind the chronically ill that we are indeed alive, and that we have thoughts and feelings which help define us - that we are more than just the sum of our physical parts. When chronically ill, to forget that we are more than our bodily parts is as damaging as our illness.

Largely spiritual thoughts and feelings may give purpose to a life that seems to have lost its purpose when illness struck and we lost our job, our hobbies, self-confidence in our physical strength, and more. We have to face the prospect of a short time left to live. What are we going to do with that time, how, and why? It deserves discussion.

Neither health care companies nor doctors must provide spiritual or emotional support. Their specialty is medicine. However, they must recognize that other issues are thrust upon people facing mortality through serious chronic illness. People deal with those issues differently, but dealing with them somehow is important to our quality of living.

Patients know that doctors often downplay non-medical issues. However, my site is not a clinic. My site is a place for sick people to gather and communicate; to support one another through shared experiences that healthy people cannot share with us. This web site is a place where we learn not only from doctors but also from each other.

My site works for those people for whom it was created: people with chronic heart failure. It is not meant to work for doctors or clinics, companies or manufacturers. I believe my site offers a great deal to those others as well - an audience of real heart failure patients. My readers understand exactly where I am coming from because I make no attempt to hide it. This keeps them coming back long after they have abandoned the latest drug company site or doctor-driven site.

Consider: one critical part of my own illness for years has been severe insomnia. Lots of people with heart failure have this problem. My doctors all shrug it off as a minor inconvenience or lack of self-discipline on my part. In my life, however, it has been every bit as disabling as my heart failure. I have given up talking to doctors about it because they do not listen - not really.

Most patients have such areas in their lives, areas they believe their doctors will not understand and may not even try to understand. So people just don't bring those issues up to their doctors at all. They do bring them up at this web site. Spirituality is one issue that patients often refuse to even mention to their doctors. They talk to me about it because they know it is part of my "thing" from its presence on my site. It's part of what I do.

If any company believes that partnering with my web site will hurt their business or their image, I would never expect them to work with me. They are in business to do business. However, I am in business to help people cope with an illness I know from the inside out, and I do what I think is best - for my readers.

Potential sponsors or partners should also realize that this web site was directly born from my faith in Jesus Christ. I did not want to create and run a heart failure site, but Jesus set me straight - see www.jonsplace.org/rel/how.htm. I will run this site to the best of my ability because He wants me to - not because it makes money.

If you want to partner with me in any way, consider that this little one-man show has done pretty well - 3 million page views a year with no financial backing at all except from my readers. These readers are uniquely available as a group only here, directly because of the very spirituality that may bother you at first. Think it over.

All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.

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