After the Diagnosis

Getting the diagnosis was step one in Jen's Lupus journey. Step two was figuring out what it all meant and what needed to be done to overcome it. At the time, I perceived Lupus as a tumor that just needed treatment or to be removed rather than a lifelong commitment to medicine. The doctor tried explaining things but used medical terminology that sounded like a foreign language which just added too my confusion.  

One of the first and most memorable things the doctor stated was, “Lupus is a terminal disease and life expectancy is about 10 years.” He also stated that I may need my spleen removed, my kidneys may fail, and I may require dialysis. He also stated I may test positive for AIDS (which was a big deal in the early 90s) and other diseases though may or may not have that disease. The information was too much to handle at one time so, I became numb. The doctor’s words sounded more like the teacher from Charlie Brown, just wah wah, wah wah wah. Nothing registered because my brain couldn’t get past the 10-year life-expectancy statement. Thankfully, my mother took notes, and my husband Terry was there with me. The two of them could probably tell this portion of the story better than I could. To me, the information was not useful and what was I expected to do with that knowledge? Was I supposed to prepare for the worst or try to prevent it?

Time for step two: I needed to know more about Lupus and what I could do to help myself or be my own doctor (as suggested by my doctor). Terry and I started reading whatever we could find at the local libraries but in 1990 there was very little information available about Lupus in general. Librarians suggested we try a college or university, but medical books were not available to the public. Honestly, we may not have understood them anyway. The only information we found was the same as what the doctor described about life expectancy and possible organ failures but nothing about treatments or symptoms. We even tried using a standard dictionary to learn medical terms. However, this too proved challenging since many words were not in the dictionary and some had more terminology that we did not understand. Step three was to learn medical terminology which as some of you know is what led to my career.

A couple months into our research (or lack thereof), I hit an emotional wall. At my next appointment, I explained my frustrations and emotional state to the doctor. So, he gave me the name a counselor who helped with people with terminal illnesses. She assured me that many newly diagnosed people often hit the same wall or became overwhelmed, even depressed.  She insisted Terry attend a few sessions to ensure it hadn’t become too overwhelming for him either.

During one session, she asked, “What scares you the most about having Lupus?” The 10-year life expectancy and the inability to prevent it was what scared me the most. She suggested that I take one day at a time and enjoy life while I had the ability to do so. She was the first person to make me realize that anyone could die at any age, at any time, and there was no guarantee I would even get the 10 years. In fact, nobody has guaranteed time on this earth.

We met with her a few more times but she felt what we really needed was a support group. She gave us literature about the Lupus Foundation of America and suggested we join a support group in our area which we did. I use the word “we” because I never did any of this by myself. Either my husband, my mom, a friend, or other family member would be with me in any endeavor.

We attended monthly Lupus support group meetings near our home, and it was a game changer. The support group gave us a plethora of handouts and information. We learned more there than from any other library we had frequented. The support group often had guest speakers, like doctors, therapists, authors, or other patients. These meetings changed my outlook on having a terminal illness and the 10-year fear seemed silly. I heard people describe their lives and how they dealt with Lupus struggles every day. Some people brought their whole family and watched them smile and heard how happy they sounded while talking about Lupus. Some people were struggling and perhaps unhappy or in pain, but they shared the struggle with the group anyway. The one thing everyone had in common is that Lupus did not stop them from living life, it just changed how they did it.

The group showed me that it was okay to be mad or unhappy about having Lupus and that these feelings were meant to be shared rather than bottled up. My perspective about having an illness changed and it was at that time when I made the decision to not let Lupus control my life nor let it get in the way of my happiness. It is possible to be sick or have pain and be happy. Sickness and pain were going to be part of my life and though I could not control when or where it happened, I could control how it made me feel. Yes, it was unpleasant at times but I tried very hard not to let it ruin my day.

My newfound positive attitude proved to be somewhat of a problem when meeting new doctors. Terry would often tell me that I should act sick when I was sick so doctors would take me more seriously. This is an ongoing struggle for me.

The support group often posted new information, new treatments, or even upcoming lectures in our area. We attended one of these lectures in Ann Arbor, Michigan which was meant for medical professionals, but the public was allowed to listen. We learned detailed information about cell structure in a person with Lupus (extra cell attached to a good cell), what reaction that causes, the actions the body takes, and how it all creates a flare. We also learned about what drugs were available for treating Lupus or its symptoms and what new treatments or drugs were about to be on the market. One such drug was called Plaquenil (hydroxychloroquine) which was brand new at the time and clinical trials had shown great success in managing Lupus. It is an antimalarial drug that keeps the body from fighting itself. In Lupus patients, the body can be so busy fighting itself that it leaves the person vulnerable to other diseases. Plaquenil works like a referee keeping all cells (T-cells and B-cells) playing nicely.

We took the newly learned information to my doctor who put me on Plaquenil that day. This drug was the first step for me in living a normal life (mostly) and eliminate the need for high doses of Prednisone which had already begun to take a toll on my body (migraine, ulcers, etc.). For more than twenty, years, Plaquenil kept me stable other than the occasional use of Prednisone for flare-ups. Unfortunately, the doctor decreased my Plaquenil dose by half last year due to the affect it was having on my vision. Patients on Plaquenil require yearly vision tests because the most common side effect is vision loss, but it is reversible if the effects are caught early.

We completed step two by learning medical terminology, finding a safe space to share information, obtain information, then began a life with Lupus. There may have been set backs along the way and things may not have gone as planned but life went on regardless of the Lupus presence.