Sunday, February 22, 2009

Journaling Part 1

Developing a chronic illness and then receiving a diagnosis along with the information that there is no cure. You will be stuck with this as long as you live, or at least for a very, very long time is traumatizing. Invasive medical tests and procedures are traumatizing. Stigma, loss of identity and self-esteem, and a myriad of unpleasant emotions are all companions of chronic illness. You may be inhibiting the expression of this trauma because you are afraid of acknowledging it or because you are afraid that you will alienate people who have to listen to you. In Opening Up: The Healing Power of Confiding in Others, James W. Pennebaker states that, “actively holding back or inhibiting our thoughts and feelings can be hard work. Over time, the work of inhibition gradually undermines the body’s defenses. Like other stressors, inhibition can affect immune function, the action of the heart and vascular system, and even the biochemical workings of the brain and nervous systems. In short, excessive holding back of thoughts, feelings, and behaviors can place people at risk for both major and minor diseases.” You certainly don’t need another disease and you don’t want to make the one you have worse. But you don’t want to drive people crazy as you tell and retell ‘your story.’ You may think that no one wants to be around a sick person. But as you just read, one way or another, the story and the feelings that accompany it have to be expressed. What can you do? You can journal. It’s just as effective as telling, and maybe even more so.

Your journal can be written or you can speak it into a tape recorder. Either way, expressing what is on your mind can help you clarify your thinking and have a profound influence on the way you see yourself and the impact of the disease on your life. When you talk, or write, about the trauma of chronic illness you stop the stress of inhibition and gain insights into yourself.

Sunday, February 15, 2009


Chronic illness robs us of our identity, hopes, and dreams. Once the diagnosis is pronounced we will never be the same again. Susan Sontag in her book, Illness as Metaphor, writes that when we are diagnosed we become citizens of the land of the sick, only visiting the land of the well on a passport. We are foreigners in their world.

Once we identified ourselves by our work, relationships and hobbies, now we identify ourselves as having the Disease. The Disease is the last thing on our minds when we fall asleep and the first thing on our minds when we wake up. Our hopes and dreams for the future are dashed. Our identity is gone. Without that identity, we are strangers to ourselves and to the people with whom we had relationships. We feel like strangers because we are strangers.

But the loss of identity gives us an opportunity to create a new identity, a new normal. Stripped of our identity as human “doings” we can learn to be human “beings.”

Sunday, February 8, 2009

Conspiracy Theories and Snake Oil

Most of us are willing to tolerate short term medical interventions and courses of treatment when we know there is an end in sight. But, folks with chronic diseases are usually on some kind of treatment regimen for the rest of their lives. They may not have a death sentence, but they sure do have a life sentence! Is it any wonder that they turn away from the bearers of bad news and go off in search of magic bullets and natural cures?

Popular advertising (print, television, infomercials, and free sample distributors in warehouse clubs) for many “natural products” on the market generate mistrust in the medical profession. The commercials want you to believe that the medical establishment has secret information that they hide from sick people in order to make themselves rich. The theory has become so prevalent, that many people actually take it to be truth. It’s time for a reality check! The vast majority of doctors became doctors because they wanted to help people, not harm them by hiding cures. The supposed “natural cure” advertising implies that the drug companies and doctors merely want to get rich at the expense of suffering patients. Ask yourself, what are the sellers of “natural cures” doing? Have you ever looked into their multi-level marketing schemes? What is the evidence for their claims? Were there true scientific studies done? What methods were used? Where are the results published? Let’s not forget that hemlock and arsenic are natural too, but they can kill you, just ask Socrates! And IF these cures worked, why are so many people still sick and suffering? Why are millions of dollars being spent on research? I was approached by a seller of some very expensive berry juice-$25 for a quart bottle-who claimed that it cured a whole range of chronic conditions. His proof? There was something on Yahoo! A supposed doctor contacted my office claiming that he had a neuropeptide vaccination that would cure lupus. It only cost $250 a shot and might take two to do the trick. Of course, it wasn’t approved for use in this country and people should call his cell because he didn’t maintain a physical office! I could post something on the internet claiming that cheesecake cures cancer but that wouldn’t make it true!

Herbs, vitamins and micronutrients are often touted as cures. Think about it; as a society, we take whole food in its natural state, fragment it, refine it, then we fortify it to put back what we took out. Wheat is a perfect example. We remove the fiber and bleach the wheat to make white flour. Then we add fiber to our water or yogurt to keep our bowels moving. We process the vitamins out of food and then pay lots of money to take the very same vitamins in pills. Why not eat the whole food in the first place? A word of caution: ALWAYS discuss any herb, vitamin or supplement with your doctor BEFORE taking anything. Some of these “natural” cures can make your disease worse or have a negative interaction with your medications.

What can you do to help yourself? Good, whole food is the best “natural cure” you can give to your body. Eat a healthy, balanced diet. Strive for one that is low in fat, high in fiber and avoids too many processed foods. Get regular exercise, even if all you can do is walk or swing your arms for a few minutes. Talk to your doctor and develop a treatment plan together. Remember, there are no magic bullets. Living your best life takes work!

Sunday, February 1, 2009

What if?

I love learning new things. This weekend I had the chance to go to a 10 hour workshop on using video in religious services. My two companions were taking the audio workshop. Early Saturday morning, we made our way to the breakfast buffet. The sausage tasted a little funky, but I thought maybe it was turkey sausage and that accounted for the strange taste. I had a few bites, asked one companion to taste it, and we agreed maybe the sausage needed to go into the circular file! About an hour into the workshop I felt dizzy and headachy and nauseous. I put my head down. Someone asked how I was feeling and I muttered that my head hurt and put my head down again. My team went out to make their 30 second commercial to get people go come to a church work day but I stayed behind, head on the table.

By the time we got to break it was pretty clear that breakfast was on its way back up. Mission accomplished, I felt a tad better but decided to nap in the car for half an hour and then return to the workshop. The leader asked how I was, and I said cheerily, “Well I lost my breakfast and think I will live.” Later, when the groups were editing, the leader dropped by where I was sitting and complimented me on “being a trooper.” I replied, “Well, I have lupus and people with lupus and other chronic diseases are used to feeling lousy, so we just keep going. After all, the alternative is to give up and I am not about to do that.”

When I was at my sickest, I was lupus. Linda ceased to exist. Slowly, over a period of six years, I created a new identity. A small part of that identity includes lupus. I have become something of a one woman lupus awareness campaign. But this was different. I realized that maybe lupus has a little bigger place in who I am that I would like to admit. Tonight is Super Bowl Sunday but I am watching a House Marathon. Football is not my cup of tea, even though Super Bowl is happening just 2 miles from my apartment in Tampa. One of the doctors told a patient that she was letting her illness define her. These two things-what I said to the workshop leader and that line from House-made me stop and think. What if my or your disease got taken away today? How would you define yourself? We struggle through all these stages of loss and grieving to come to a place of acceptance and even transcendence when it comes to disease. Knowing that our condition is forever, we find ways to integrate it into our lives and personalities. I suspect that if we were miraculously cured, we would have to rebuild our identities yet again.