My Life with Lupus

By Robin Ellis

On the television show “House,” the title character is known for his oft-repeated phrase, “It’s never lupus.” Unfortunately, Doctor, sometimes it is.

I was always a sickly child, but in my late teen years I shifted into a continuous bout of joint pain, weakness, clouded thinking, and depression. I bounced from doctors to specialists with frustratingly inept outcomes, sometimes morphing into downright skepticism. One doctor even had the nerve to pat my cheek and say, “All women have aches and pains, dear.” I finally contacted a doctor who, while telling me I was too young to have these problems, at least agreed to run some more intensive tests. A week later, he called to inform me that I either had lupus or rheumatoid arthritis. This was the start of my journey through the valley of the shadow of lupus.  

Systemic lupus erythematosus is an autoimmune disease where a person’s body basically decides that it has self-loathing issues and attacks itself. The clincher is that autoimmune diseases like to travel in packs. My lupus decided to invite along fibromyalgia and Sjogren’s syndrome. Other people experience different issues. Lupus is like that annoying friend who always brings extra guests to your party without permission.

Once properly diagnosed, I actually had a feeling of relief at knowing and naming my foe. The unknown is always more intimidating than the certainty. I found myself faced with a few questions, each more daunting than the last.

  1. What does this mean for now?
  2. What does this mean for my future?
  3. What does this mean for my family?

And perhaps most frightening,

  1. Who am I now?

I discovered that the answers would not come immediately. As time passed, I travelled a map of hills and valleys, flares and remissions, fears and hopes. Days varied dramatically. Lupus is a chronic disease, meaning it can only be managed, at best. There is no cure and yet, the vast majority of people with lupus live normal life spans.

For me personally, learning to live with constant, chronic pain is overwhelming. I miss waking up in the morning to a new day feeling refreshed and rested. I begin each day barely able to move, reaching gingerly for the medication that will enable me to begin my day. Some days are wonderful. Some, I am curled into a fetal position on the bed, the pain so intense that I begin to lose myself to it completely and feel that “Pain” represents all that I am in that moment.

It is truly impossible to experience chronic pain and yet avoid emotional pain. I found myself clinging desperately to the role titles of my life – wife, mother, daughter, et cetera. I rebelled at the thought of “Oh yeah, that’s the gal with lupus,” coming before any of the more precious roles of my life.

I heard a doctor say once, “Pain is a soul thief.” My first, rebellious thought was, “It can try,” followed by narrowed eyes and a sassy hair flip. I vowed that my pain would only bring soul growth. Honestly, while a lofty goal, that was a bit naïve. No one likes being forced to reinvent themselves. It brings forth a natural rebellion. My inner voice whined a lot! Once the internal kicking and screaming abated, the real work began.

Invisible illnesses bring along nasty feelings of rejection, isolation, loneliness, and worst of all, guilt at not being able to do all that we want to do for those we love. When the essence of every role in my life had changed, and I felt like a puzzle with several missing pieces, I found that being brought to my knees wasn’t so bad when I could count on feeling myself being lifted up every time. Those strong hands have belonged to many people and many circumstances – from my faith to my family to a gentle hug or an encouraging word.

I used to miss the person I was before lupus. Oddly enough, I wouldn’t go back to that girl. I have learned patience and compassion. I have been blessed to see my family shine like the brightest stars. I’ve come to picture myself as a warrior, turning stubbornness into resilience.

There is a quote I’ve come to love by an unknown person that says, “When you look into a field of dandelions, you can either see a field of weeds or a field of wishes.” I may be unable to control many physical aspects of my life, but I have the power of my own mind, heart, and soul to always try to see a field of wishes.

So take that, lupus.