“But You Don’t Look Sick” — the invisible vulnerability of living with an invisible chronic illness

Yesterday I heard those words that can bring so many confusing emotions to the surface when you’re living with a disabling chronic illness:

“But you don’t look sick. You look so healthy.”

I’ve heard it before a few times in my life, but hearing it this week hit hard because it has actually been a particularly rough week physically.

It’s been a rough start to the year physically.

It’s nice to hear that I’m looking well, because of all the hard work and effort that goes on in the background that makes me better than before I received an accurate diagnosis and had a proper management plan.

But the things in the background don’t cure me. Breakthrough pain happens. Symptom flares happen. Just because I don’t have my walking stick doesn’t mean I’m not struggling to walk.

My illnesses are invisible for the most part, unless I pop my hip out on command or bend down to touch the ground with my elbows, pull my skin from my neck, or any number of unwise and unhealthy “tricks” that I really should not be doing to prove to someone else that my body is not like theirs.

Unless you see me crying and groaning in the middle of the night because the sheets are hurting my skin and my muscles feel like they are burning from the inside out; see the egg-box mattress cover, memory foam pillow, and orthopedic knee cushion on the bed providing some level of comfort. Unless you see me organising and taking 4 different prescription pain medications 3 times a day set to the rhythm of a well-spaced alarm; watch me anxiously obsessing over how to manage my time because of how little energy I have to spare but there are still things that need to be done. Unless you hear me scheduling rheumatology and GP appointments by email or phone; see me pushing through medication side effects; feeling bad because I can’t keep track of messages and sometimes struggle to talk without slurring or forgetting words. Unless you listen to me giving myself pep talks in the morning to get out of bed because lifting myself up hurts; observe me shaking and sweating unless I eat at regular intervals; enemas, sinus rinses, inhaler pumps; wearing compression socks and braces, corsets, guards and tape…

Unless you see everything that goes on in the background, then the smiling, laughing, freckles, bright eyes and sun-kissed skin might deceive you. Unless you visit me in the background and see the physiotherapy sessions, hear the psychotherapy sessions, join the Pilates classes, then my mobility one day and walking aid the next may confuse you.

Unless you live with me, hear me, hold me, love me, be with me in the background, help me wipe the tears from my cheeks because my forearms are too weak and sore to do it myself…

Unless, unless…

Unless I say to you, “I am unwell” and you believe me, the woman who stands in front of you smiling attentively, interested in what you have to say might not show you how much it hurts when you innocently, unknowingly, unexpectedly say, “But you don’t look sick.”