living with lupus, day by day, moment by moment

I can’t work.  That is not the same as saying I won’t work.  The latter assumes a choice but with my illnesses, I have no choice.

When I was first told that I have a mysterious “autoimmune” disease that is incurable but not necessarily fatal, my only concern was how this illness was going to affect my career.  Truly, I should have ordered some background reading on lupus, on autoimmune diseases, on being chronically ill and what it’s like to live with an invisible illness, but I didn’t do any of that.


The only book I ordered after my lupus diagnosis is “Women, Work and Autoimmune Disease” (Rosalind Joffe and Joan Friedlander), a book encouraging women with chronic autoimmune diseases to “stay employed to preserve their independence and a sense of self.”  I really took the book’s messages to heart.  Indeed, I wasn’t going to let an illness stand in the way of working, of being financially independent and of pursuing a career I loved.  Of course, underlying all this was a huge assumption that I COULD work if I wanted to.  That working was my choice, something within my control.  I learned the hard way that it is not.

My first day at work as a young lawyer, my office mate and I found ourselves filling out a stack of HR forms.  One of the forms asked if we wanted to increase our disability plan, in case we couldn’t practice anymore.  25 years young and healthy, I could not think of anything that could possibly prevent me from practicing law.  In fact, my office mate and I reasoned that at our very own law firm, we had blind lawyers, deaf lawyers and lawyers in wheelchairs; we just couldn’t picture a scenario where practicing law wouldn’t be a possibility!  At that time, it never occurred to me that there are debilitating, chronic illnesses, that can prevent you from working.

So when I found myself fighting for my life a year after my diagnosis, I was so angry at this book. I felt I was misguided.  Instead of just arguing why we should keep working, why didn’t the book tell me that lupus is life threatening?  That sheer willpower alone will not allow you to fight through it.  That it isn’t possible to “just keep working girlfriend.”  This book made it seem like if we tried, we can overcome the obstacle of the illness, and work.  And while the disease activity is different for everyone, this is not the case for me.  I am sick all the time.  I only have two states of being – sick or ill.  I cannot push myself even though I want to.  With my lupus, pushing myself means I will be sick to the point of endangering my life.  If I push past my fatigue, I will get sick.  If I push through my sickness, I will become ill.  Never mind the pain!

There are plenty of people with autoimmune diseases who are able to work, full-time, part-time, with or without accommodations. But I know many others for whom working is not a viable option.  The issue I have with this book is that it sends a message that anyone with an autoimmune disease can work, if they tried.  Trust me, many have tried and many wish that we could work.  Being disabled sucks.  Being limited by your illness? Sucks.

I get asked all the time if I miss working.  The answer is so simple – yes, absolutely.

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