You Don't Look Sick

 

      "You don't look sick"

      Its a phrase I have heard more times than I can count in the twenty-six years since I first began navigating this invisible battlefield. At first, it makes you pause, wondering if the person speaking genuinely means well, or if they are being cruelly oblivious. After a while, you stop asking yourself anything at all and just smile, or grimace, or sometimes, if I'm feeling particularly sharp, I respond with "Well, you don't look ignorant, yet here we are."

      Lupus is a disease of a thousand faces, each as unpredictable as it is cruel. One day, I might be walking along the beach, my hair perfectly coiffed, my makeup flawless, my energy deceptively calm. The next, a flare-up can strike with the subtlety of a hurricane, and I am reduced to counting hours on the couch, too exhausted to lift my head. It's invisible, insidious, and fatigue in a way that most people will never understand. And yet, because I can maintain a semblance of normalcy- because I look fine-the world often assumes I am fine. 

     My journey began twenty-six years ago with confusion and misdiagnosis. Initially, I was told I had rheumatoid arthritis and mixed connective tissue disease. It took years of uncertainty, countless tests, and more misdiagnoses than I can remember before I met Dr. Rothwell, a remarkable old-school rheumatologist who finally saw what others had missed. He looked beyond the surface, beyond my composed exterior, and gave me a name for the chaos inside my body: lupus. That moment of clarity was like changing, not because it made the disease disappear- it didn't- but because finally, someone believed me. 

      Living with lupus is an exercise in patience, adaptation, and self-compassion. Life slows down when you are forced to pay attention to every twitch, twinge, and ache. The simple things- sleeping well, listening to the subtle signs of change, respecting the limits of your own body, become critical. The biggest threat to my health, by far, is the infections. Random, sudden, vicious infections that knock me flat for months, sometimes leaving me questioning if I will ever feel normal again. 

      One particular chapter of my life was defined by a six year struggle with fistula abscesses on my colon. Imagine a life punctuated by emergency room visits, countless painful procedures, and  the persistent shadow of chronic infection. For six years, I had no life beyond my illness. Every plan, every dream, every ordinary activity had to bow to the unpredictable chaos of infection and recovery. Finally, a specialist intervened and placed a permanent drain, giving me an appearance of freedom I had not known in half a decade. Yet, even now, infections strike without warning, reminding me that the struggle is never truly over.

      And through it all, there are the words. You don't look sick. They sting because they carry an unspoken assumption that illness is always visible. If my hair is styled, if my makeup is in place, if I dress neatly and move through the world with a smile, then surely, people think I must be fine. It shocks me how small minded people can be. Invisible illnesses are often met with disbelief, dismissal, or condescension. Until the word "lupus" is spoken, most people cannot reconcile the contradiction between my appearance and my reality. Then, suddenly, eyes widen with recognition: "Ohhhhh...now I understand." But until that moment, I feel compelled to explain myself constantly, as if my body's suffering needs justification. 

      My professional life has also borne the weight of this disease. I have not held a traditional job for long lengths of time, for over twenty years because the random, debilitating nature of lupus makes consistent employment impossible. Flare-ups can last for months, rendering me immobile and entirely dependent on the support of others. This limitation, however, has led me to a path of autonomy. I am now majoring in psychology, building a career that allows me to work for myself and accommodate the unpredictability of my body.

      Throughout the years, I have encountered both remarkable and less-than-stellar medical professionals. There are always a few assholes in any profession, but I have also been blessed with extraordinary doctors, surgeons, and specialists who have guided me with expertise and compassion. Still, there have been moments of dismissal, of being labeled "dramatic", of having my experiences minimized because I do not always conform to expectations of visible illness. I have learned to navigate this tension with resilience and wit. I rise like a phoenix from the ashes after each bout of sickness, carrying my scars not as shame, but as testimony to survival.

      Creativity has been my anchor. Writing, painting, driftwood creations, sewing, journaling- these acts of creation are not mere hobbies, they are lifelines. They remind me that I am more than my disease, more than the sum of my infections and flare-ups. Family is another pillar of my endurance. My son, my grandson, and the beauty of everyday life ground me. Mother Nature, the ocean, the beaches of my home, offer profound healing that no medication can replicate. Meditation, daily affirmations, gratitude practices- these are not just comforting rituals, they are active tools of endurance. 

       Living with lupus is a masterclass in humility and vigilance. Every day requires awareness: knowing the subtle signs that infection is approaching, honoring the limits of physical exertion, and balancing activity with rest. Life becomes a negotiation with self, a conversation with one's own body, and an ongoing exercise in self-compassion. Not all illnesses are visible, and lupus is the king of invisibility. People who have never walked this path cannot see the internal storm, and often, they fail to believe it exists. 

      Yet for all the challenges, there is remarkable beauty in this slow, intentional way of living. The world sharpens when you live with limitations. Small joys- a calm sunrise, the sound of waves, the laughter of a loved one- become magnified. Gratitude becomes second nature and resilience becomes instinctual. I have learned to embrace these gifts, even amid the relentless reality of illness.

      Humour is essential. It is a shield, a sword, and a reminder of the absurdity of life. I have learned to meet ignorance with wit, to confront misunderstanding with clever retorts, and to reclaim power in spaces where it is often denied. Saying "Well, you don't look ignorant, yet here we are" is not just a response to "You don't look sick"- it is the reclamation of dignity, a refusal to let someone else define my experience. 

      The broader lesson, I believe, is one of empathy. Invisible illnesses demand understanding, patience, and humility. We cannot judge another's suffering by appearances. We cannot assume ease where there is struggle. If there was one thing I wish the world knew about lupus, it is this: do not make assumptions. Look beyond what is visible. Listen. Believe. And above all, recognize the strength it takes to navigate a life that few can see, but many would dismiss.  

      I live a life of contradictions- fragile, yet tough, limited yet expansive, in pain yet capable of joy. My disease challenges me, yes, but it does not define me. I am an artist, a writer, a mother, a grandmother, a lover of life and nature, and above all a legend of strength. I live fully within my limits, and I honor the body and mind that carry me through each unpredictable day.

      So the next time someone says "You don't look sick", know this: I have walked through fire and returned to tell the tale. I have faced years of uncertainty, countless infections, medical dismissals, and the slow, grueling grind of chronic illness. And yet, I am here. I create. I love. I endure. I rise. 

      You may not see the scars, the exhaustion, or the battles I fight daily. But they are there. And they have made me unbreakable. 

      Because lupus may take my energy, my comfort, my predictability, but it cannot take my spirit. And it will never, ever take my story. 

                 Written by Janine Reid