When Memories Take on New Meaning: In Honor of Lupus-Awareness Month

A twenty-something year old woman travels to the other side of the world on a study abroad trip. It is her first time to this city and she wants to see everything! She lives in student housing with five other young ladies who after dinner are excited to explore the local bars and dance clubs. The young woman wishes to join them but feels so tired. She wants to go to sleep. It is 10pm and her suite-mate asks her why she is not joining the group. The woman replies, "I am so tired." Her suite-mate stares in disbelief and reminds her that she did not travel thousands of miles to go to sleep. After all this young woman is not an old lady, even though in that moment she felt like one.

It was a beautiful August day. A seventeen year old girl felt pins and needles throughout her calf.  Parts of her leg stayed numb for hours. Her wrists hurt badly. She wondered if it was all the racquetball she had played on the beach. These random and strange symptoms went away after two days.

The pediatrician reported that the rashes on this fourteen year old girl's torso were an allergic reaction. To what? Unknown. Fifteen years later these rashes appeared on the girl's legs. The dermatologist said it was allergic reaction to a medication. They were so itchy...it was unbearable.

A twenty five year old woman is convinced she has mono. She can barely muster the energy to get out of bed in the morning. She feels as if she has the flu. Something does not seem right. She visits her doctor. Blood tests are normal and there is no swelling of any of her organs. She is told she might just be getting over an infection and her body is just taking time to adjust. It did not seem right to her but eventually her energy came back.

A thirteen year old girl is convinced she is having an asthma attack and is taken to the emergency room. She feels as if she cannot breathe. There is an intense pressure on her chest. The E.R. doctor asks her to breathe in tube to measure air flow and pressure. He tells the girl's mother that her air flow is not obstructed and her breathing is normal. The adolescent girl is convinced that something is wrong and the ER doctor orders an X-Ray. The doctor is surprised when the X-Ray shows inflammation around the inner lining of the girl's lungs. He believes it is related to allergic asthma.

These are just some of the memories of one person. These are the memories, which until a diagnosis of lupus was made were memories of random and unexplainable health problems. These are the memories which at times made this person feel flawed, strange, and as if none of these symptoms were worth making a big deal about. This is the cruel mystery of lupus. Years and years of strange symptoms that did not seem to be related to each other but which in hindsight form a picture of a person with lupus.

Lupus is typically very difficult to diagnose because of the range of symptoms with respects to both severity and symptom type. After a diagnosis is made, a person can look back on his/her life and recall moments--memories that all seem to make sense now. It is like reconstructing a complete narrative of one's life. A person may think, "so I am not just a person with bad luck and a propensity for random health problems." These memories take on a whole new meaning. One may wonder about, "If I only knew then..." or "why didn't these doctors put the pieces together" or "maybe I am not lazy or like an elderly person after all!!!" It is not fun to receive a diagnosis of a chronic illness; however, recalling memories that now make sense post diagnosis can be incredibly healing psychologically. It doesn't all make sense now but maybe it makes more sense than it did before!

May is Lupus Awareness Month. Take a moment to educate yourself about this bizarre and debilitating illness. Maybe make a donation to one of the many organizations that support research to help find a cure for this currently cureless mystery.