Being a daughter of a Lupus patient is a unique way to grow up.  I do not have the disease myself, but experienced many of its effects through my mother.  She was diagnosed when I was a year old, and lived with Lupus until last June when she passed away.  I was twenty-two years old when she died, and at that moment Lupus branded itself on my existence in a way that can never be erased.  There are millions of children across the United States whose mothers live with this life-threatening condition.  We daughters are a strange breed, experiencing Lupus in distinct ways, and have insights that may help one another.  What follows are some of my personal experiences, explaining what it means for me to be a daughter of this disease.

Growing up with Lupus in your family turns you into three things.  First, you become a detective always on the hunt for clues about what the disease is doing to your mother at a given point in time.  Next, you serve as an ambassador of this condition whether you like it or not, by inevitably bringing it to other people’s attention.  Finally, you spend long periods of time not understanding Lupus, but doing your best to accommodate it in your life. 

A Detective

Since the majority of symptoms are not visible on the surface, daughters of Lupus have to examine that which they cannot see.  My mother did not have a butterfly rash, or any telling signs to signal that she was “sick.”  As a result, the teenage me found it very hard to know what the disease was doing to her at a particular moment.  Instead, it was necessary to tune into unspoken signs to get a sense of what was going on.

The temperature outside was a reliable clue to help me understand how my mother was feeling.  Although it might seem to have nothing to do with one’s physical makeup, the weather predetermined what her energy levels would be, and how much she was capable of achieving.  Once spring came along, I looked out my window each morning conscious of what the humidity or sunlight could mean for her.  If I had an awards reception or graduation scheduled to take place outside, I worried throughout the event that she was suffering in the heat because of me.  Every time we left the house during the summer, we brought along a scarf, sweater, wide-rimmed hat, and two pairs of sunglasses—one regular and the other extra dark—to protect her from the sun.  When even this armor failed to shield her, I knew that it was a bad day for her Lupus.

Symptoms like swelling and fatigue can seem utterly innocuous if you do not assess them carefully.  Everyone gets tired, right?  Don’t lots of people get swollen ankles when traveling on an airplane, or see their fingers blow up when it is particularly hot outside?  Because these two phenomena are widespread amongst many people, it is easy to dismiss them.  But with Lupus, they can be critical indicators of an increase in activity from the disease. 

I often silently glanced at my mother’s hands in order to gain a sense of her wellbeing.  If they were inflamed and pinker than normal, I was able to gauge where she was on the spectrum of health on that day.  Likewise, I observed the rhythm of her sleep patterns carefully.  When her regular afternoon naps became insufficient to sustain her energy, this clued me in to the frail state to which Lupus had reduced her at that moment.  Naps and hands are quite unscientific measurements, but sometimes they were the only clues I had to help me solve the mystery of my mother’s Lupus.

If I did not listen and watch carefully, I might have missed these tentative indications of how severe her Lupus was at certain points.  I could not look to any external signs to help clue me in, since she usually looked healthy and happy on the outside.  But by treating seemingly subtle factors as telling pieces of evidence, it was possible to understand something—anything—about what was happening to her.  Only by looking at these signs was it possible to see that under the surface all was not well.  

An Ambassador 

No matter how much you try, you can never escape the fact that you are a daughter of Lupus.  Inevitably, somebody will ask why your mother was absent from a specific event, or why she does not “work,” or why she spends so much time in the house.  Every time that I responded to one of these questions, I acted as a form of ambassador of the disease.

Since the level of public awareness about the disease is so low, I frequently found myself representing Lupus to the outside world.  I remember years of not encountering a single person that had even heard of this condition, and whose eyes glazed over at the multi-syllable word “autoimmune.”  How could I answer their questions, and show them that my mother was not just lazy?  In such cases it seemed that Lupus was a foreign language that only I was able to translate.  I relied on the explanation that Lupus was the opposite of AIDS, where the immune system goes into a dangerous overdrive.  I also drew upon the metaphor of an internal civil war, explaining that in Lupus the body turns against itself.  Intent on proving that my mother was not idle but instead contending with a serious disease, I gained practice communicating Lupus to everyone that I encountered.

It is not as if I were consciously seeking to be an advocate or publicist for this condition.  In fact, it was the opposite.  Other priorities, such as getting into college or building up a resume, always outweighed any duty I felt towards this cause.  But despite the apathy I felt towards actively contributing to Lupus advocacy at the time, I nonetheless stepped into this role anyway.  Since Lupus resided in my home, and plagued one of the most important people in my life, I inevitably faced the task of talking about it to other people.  This story, explaining Lupus and its meaning for life, issued forth from my mouth numerous times throughout my youth and early adulthood.  I believe this may have increased some people’s understanding of the disease, even while I simultaneously struggled to comprehend it myself. 

Incomprehension   

Although I loved my mother very much, I was often frustrated by the limitations that the disease imposed on her.  I freely admit there were many times that I rolled my eyes at aspects of her Lupus.  I often did this when she could not recall a person’s name during a conversation, or was lying down for yet another nap.  As a twelve year old, I also found her multiple pairs of sunglasses to be embarrassing, and wished she could just be like other moms.  As I got older, though, my self-esteem overcame its preteen anxieties, and I moved away from this earlier behavior.  I began to accept that I could not ignore or protest against Lupus, and tried to reach a peaceful coexistence with the disease.

Throughout my college years, I came to some personal conclusions about Lupus.  Over many cups of tea, I asked my mother about her autoimmune condition, and listened closely to the insights that she had gained throughout her illness.  I began to accept that, as much as I might try, it was impossible to really know what Lupus felt like.  I could only ever know by association.  Rather than trying to gain a true enlightenment about the essence of dealing with Lupus, I then focused on the indirect help that I could realistically provide.  I concentrated on bringing her happiness, and achieving victories in my own life to thereby bring joy to her.  One of our proudest moments was my graduation from college last May.  Although she was there to see my cap and gown, one month later Lupus forced her to leave my life forever.  I plunged into a new round of incomprehension about the disease, and it is one that I continue to slowly work through.

I struggle to understand Lupus, and why it intervened in my life in this way.  I may never come to terms with either of these questions.  Yet even if answers remain elusive, Lupus is a part of my life now and forever.  Although I wish to banish it from my thoughts, I cannot escape the role that the disease has in my past, present, and future.  It overshadowed my childhood, created the current void in my heart, and leaves a future without my mother stretching before me.  Although my mother is gone, Lupus is here to stay.  It is a force I have to accommodate, whether I want to or not.  In recent months, it seems, I am reaching a new equilibrium in which Lupus activism is a central priority for me.  Perhaps the only way I am able to accommodate the necessary place of this disease in my own life is to ask the same of others.  By spreading awareness of the disease that killed my mother, I ask other people to acknowledge that Lupus has a place in this world, and can even pose a threat to their own families.  By encouraging people to recognize and become aware of Lupus, I ask them to accommodate the disease in their own lives just as I have had to tolerate its place in my own.  Such a collective realization, I hope, will pave the way to finding a cure.  

A Word to the Daughters of Lupus 

To all the daughters of Lupus, a few words.  I urge you to be thankful for your mother, and for the time that you have together.  Appreciate the medications that keep her alive.  Yet, at the same time, do not be content with the current medical status quo.  Fifty years, after all, is too long to wait for a new drug to be introduced to fight against this disease.  (Eisenhower was President the last time a new Lupus medication was developed.  Come on).  Take action to improve the life of people and families with Lupus: raise awareness, use the hours you already spend on the Internet to bring it to more people’s attention—post on your twitter status, facebook wall, or even blog about your mother’s story.  Never forget—as I did—that Lupus is life-threatening and can take the people that we love away from us.  Be a detective, ambassador, and accommodator for your mother now and forever.

Article written by Rebecca Geraghty                                                                                                      

Rebecca Geraghty is a recent graduate of New York University, and experienced Lupus firsthand through her mother’s illness and death in June of 2009.  She is a member of the Lupus Alliance of America Long Island/Queens Affiliate, and traveled to Washington D.C. in March 2010 to lobby members of Congress to treat Lupus as a national priority.  She hopes that this article might be of use to the millions of mothers and daughters that are linked together in the battle against this terrible disease.