"What I want to say when people tell me, 'you don't look sick.'"

“But you don’t look sick?”

A question, a phrase, often heard many times throughout the life of a person living with chronic illness.

I thought it would be fitting to explain just what this statement means to a patient of an autoimmune disease.

We have all, at one point or another, been afflicted by illness, whether it’s a minor cold or a life threatening condition.

Lupus is a complex disorder to explain.

Often when people ask me how I am feeling, I find it difficult to put into words exactly what I am going through. I tend to describe my symptoms by saying, “Imagine feeling like you have your period, are struck down with the flu and have completed a marathon all at the same time.”

This is what it is like to live with lupus.

There are many forms of lupus which can have physical symptoms. Disfiguring skin rashes, irritating lesions, weight gain or significant hair loss are just some of them. What people don’t see is the turmoil beneath it all. Extreme fatigue, painful joints frozen in time, and cognitive disorientation, all very real and very raw symptoms of a disease taking hold of the body.

It is an unexplained feeling that no matter how hard you try; your body will not cooperate. I have had those days. The mornings where my children missed school because I couldn’t find the energy to get out of bed. The afternoons spent sinking into the couch while Netflix took over parenting for the rest of the day. The nights where frozen dinners were a staple because my legs wouldn’t let me stand.

“But you don’t look sick?” a friend once asked. It’s true. On the outside, despite the dark circles formed under my eyes from dealing with insomnia, I appear relatively normal. On the inside, however, I am slower than most. My brain is playing catch-up trying to make sense of a conversation being had. My bones are screaming for respite from standing in line at the grocery check-out. But, I don’t look sick.

Living with lupus has taught me two very important things.

  1. Life is unpredictable. Even though I do my best to manage a healthy and balanced lifestyle, all it takes is one cold or 15 minutes too long in the sun and I have taken two steps back. It’s a game of give and take, and learning to accept that a day spent in bed isn’t a waste but merely my body recovering and preparing itself to stand back up again.
  2. The lady sitting on the train, staring out the window, she may be in pain. The mother pushing her child on the swing for hours on end, she may be in agony. The quiet man, lost in thought and speaking few words, he may be struggling to process the battle in his mind. The average passerby may just never know the silent discomfort and exhaustion behind chronic illness. I see things in a different light. I have learned to be more patient with those around me and more understanding in seeing the pain they might be experiencing.

I want the world to discover and understand there is always more than meets the eye. It’s time for us to come together and raise awareness and encourage others to take the time to recognise this crippling disorder, and one day, through joint efforts and dedicated research, we can hopefully find a cure.

For further information about lupus or to make a donation towards funding vital research, you can follow the links to Lupus NSW and Lupus Research Alliance.

This post originally appeared on Tiny Bricks and Me, and has been republished here with full permission.