RedGage

In December 2002, I realized that I did not have a simple stomach influenza because after two weeks I was still dealing with severe diarrhea and vomiting. I smelled like an occupant of an old folk's home. My husband began carting me off to the ER. Unfortunately, we were dealing with military doctors on a military base. They suggested to my husband that I had severe mental problems.

When I finally was admitted to the hospital, my kidneys were failing. Eventually I was sent to a special nephrology hospital where I was diagnosed with a Vasculitis disease. The medications (cychlophosphamide and prednisone) were so potent that I spent the first year sleeping. It was near the end of the first year when my rheumatologist started weaning me off prednisone that I began to deal with my grief.

Shock and Denial

Before I was admitted to the hospital, I was starting a Master's degree in Adult Education. When I was able to think again as my prednisone dosages were lowered, I started asking my husband for catalogs to various colleges in my area. I wanted to finish my degree. My husband would patiently tell me that I was not ready to start college again. I was too tired, too sick, and too etc.

I would stare at him blankly and then continued asking for the catalogs.

Some times when I was having hallucinogenic reactions to the prednisone, I thought that I was a detective searching for the answers to my illness.

Volatile Reactions

When I realized that I could not remember even the simplest things, I would throw my books across the room. I would scream, shout, and cry. After a bout like this, I would be so tired that I would sleep for hours. Every day about three p.m., I would start again.

It was during this stage that my husband realized that even though I had had the disease for months that I had not mourned the loss of my physical and mental abilities.

Despair

I am not sure how long this stage lasted. I know that I cried a lot. Then I would become volatile again. I wondered if there was any reason to continue. What would life be like if I couldn't read, exercise, and live my former life?

At one point, I decided that I would commit suicide. Frankly, what kept me from suicide was the fatigue. I was too tired. And then, thankfully, I plunged into the next stage.

Reorganization

At this point, I began to see the blessings in my limitations. I might not be able to work or make much money, but I was still living. I had a husband who loved me and stood by me through the worst of my illness. I could still write.

And even better, little by little I could use the brain that I had taken for granted all my life. What helped the most was when I found a support group with people who were dealing with the same problems. Also, I was able to help other newly diagnosed patients. It put my own life in perspective.

So as you deal with someone who is newly diagnosed with a chronic illness, please be patient. A chronic illness is for life.  Just like someone grieving over a death of a loved one, this patient is grieving over a loved life. It will never be the same again. Never.