What I wish you knew about living with lupus

Even if I look well, my body is waging war against itself. Systemic Lupus Erythematosus is a complicated and ever-evolving autoimmune disease that often gives the illusion of wellness while the afflicted person mostly feels like trash.

I never would've imagined that my own journey would begin with a simple pain in my wrist. In 2013, a year after graduating from undergrad, I was eager to enter the workforce. What I thought was tendinitis progressed to joint pain in my fingers, elbows, and shoulders, as well as flu-like aches and debilitating fatigue. It was agonizing getting up in the morning, but I still went to work like nothing was happening.

It took several appointments with my family doctor before I felt heard: something was actually wrong, it wasn't all in my head. After six months of wrestling with unexplainable aches and fatigue, I finally had my diagnosis.

Lupus.

I wasn't devastated. I was numb but relieved that I finally had the language to explain what was wrong with me, even if I didn't know what it actually meant.

When you have "the disease with a thousand faces", which is still a mystery to the medical community, it's very hard to come to terms with what it means for yourself — let alone explaining it to others.

For me, lupus used to mean that I have aches in my joints, chronic fatigue and if I forget to take one of my medications, my whole body is in pain. After a while, lupus evolved into what doctors refer to as secondary Raynaud's, where I lose circulation to my extremities when I spend time in the cold. Because of this, a simple trip to the gas station in the winter or to the frozen section at the grocery store can often be agonizing. Lately, it has also meant spending 12 hours every month at the hospital to receive treatment to avoid nerve damage.

One of the hardest parts is explaining how volatile lupus can be: just because I look and feel well now does not mean that I won't need to stay in bed, exhausted, later. On the days when these invisible flares cause me to cancel my plans, I usually explain it to others as "I'm tired". Even if this "tired" is more complicated. 

Some people mistake my last-minute cancellations for being anti-social, lazy or boring. Some are understanding and encourage me to rest. Still, the guilt of cancelling plans often causes me to follow through on those plans, even if my body suffers.

Because of this turmoil, it becomes hard to make concrete plans with others. Every time I do make plans, see them through, and recover, it's a private victory. This victory is often celebrated with caution because of the fear that my body can flare up at any time. With all this ongoing emotional labour, it can be exhausting to also nurse people's reaction to my pain when I do decide to express it.

I'm still learning to honour my own grief of a normal life in all of its endless waves and moods. This body continues to surprise me with her resilience, so I'm learning to celebrate her more loudly, when I can.