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11 Visible Signs That Provide Evidence of an 'Invisible' Illness

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*Notice Before Proceeding: Images of blood, needles and flesh. Don’t worry, not that gruesome.

Chronic illnesses are frustrating because they’re invisible. We look healthy, yet the pain under our skin can be excruciating. But is pain ever fully invisible? Painkillers can help mask the evidence, but for those with chronic pain, they provide minimal relief.

If you pay enough attention, you will notice the little clues. Imprints of pain that the owner tried to conceal, but there’s always a little something left behind. Maybe it’s the dark eyebags or bloodshot eyes. Or perhaps it’s the cracked lips, swollen fingers or bloated tummy. You know, the areas of someone’s body that you don’t pay much attention to. We tend to only notice the overall shape or wellness. Maybe it’s the look of permanent fatigue that you’ve presumed is their normal appearance. Or the remnant wounds from some skin irritation that never seem to heal. Or the minute actions we repeat, such as rubbing our bellies, squinting, or shaking our wrists. It’s there.

Sometimes you don’t use your eyes, but your ears. Or rather, what you don’t hear. I tend to withdraw into silence when I’m in pain. Back in school, my friends would often ask me what was wrong, while others assumed that I was an arrogant bitch. They thought that I found the conversation topic boring. In actual fact, I was concentrating hard on being present as I was in pain. The best thing they could do was to carry on as per usual, and allow me to participate in my own way.

I have decided to post some photos to provide evidence for my case. These are little signs that you wouldn’t notice unless you lived with me, or if I brought them up first. They are inconspicuous, until they ruin you enough to be obvious.

1. Hair Loss

hand holding pieces of hair

My hair was falling out in these clumps every day over a period of time, mostly due to medications. This excludes the other strands scattered all over my house. It was frustrating to see more hair on the ground, right after I had mopped up.

2. Head and Brain Inflammation

bruises on forehead

When I tell people that I have brain inflammation, what I mean is that there are micro haemorrhages in the blood vessels there due to lupus. Sometimes this goes into overdrive and bulge out in swollen lumps. My hair hides most of them, but I can’t do anything about the ones on my forehead. They look like rashes, but feel more like bruises. Sometimes they don’t go away for days, and start to give me a headache from a buildup of pressure.

3. Eye and Lip Inflammation

woman's face with red spot on eyeball

I had to stop wearing contact lens all the time due to dry eyes from Sjögren’s syndrome. No matter how much I moisturised them, it wasn’t enough. Your eyes can turn red from a lack of moisture; this can range from mild irritation to a persistent pain. There’s no pill you can take to make it feel better. Here’s what it looks like when the inflammation travels over to the eyes. Lip inflammation is a little more obvious when seen up close in person. I hate having it there, and I can’t conceal it.

4. Inflammation in my Hands

bruising on palm and wrist with bandage on it

My hands are a favorite target, and warning signs of an upcoming flare tend to start from there. The swelling is actually three times more painful than it looks in this picture. Put it this way – if someone is able to hide their pain when it is bad, imagine what it must be like when it becomes visible.

5. Bleeding that Takes a Day to Stop

blood running down leg

I have a blood clotting disorder, antiphospholipid syndrome (APS), and take blood thinners (warfarin) to prevent blood clots. While this helps to prevent strokes, heart attacks, DVTs, pulmonary embolisms and more, the downside is bleeding that doesn’t stop. Clean cuts are the worst. A paper cut can take 24 hours to shut its gap. I am aware of the fact that I can bleed to death in a major accident.

6. Bruises from Blood Thinners and Medications

bruises on legs

As mentioned, I am on blood thinners for APS, which makes it easy for me to get bruises. A light bump or punch can add a new one to the collection, and often I’m surprised to find them there. My shins are covered with a different kind of pigment discolouration, which is a side effect of taking hydroxychloroquine for my lupus.

7. A Secret Lie Down in Public

half of woman's head laying down

Here’s me at the dentist, curled up on the couch as there was no one there. I had ground off half a molar tooth, so I had no choice but to be there despite having a terrible day. When I walk out of that room, nobody would even know I was in pain.

8. My Daily Cocktail

row of pills

I take my medications in three separate doses per day, but I have combined them all for the sake of this article. That’s a total of 21 pills (I actually didn’t know as they keep changing, and counted them just for this post!). If I look fine to you and appear to be able to function, it’s because I take this many pills per day.

9. My Heparin Injections and Coaguchek Kit

heparin injections and coaguchek kit

This is something you’ll only see if you live or travel with me. I love my Coaguchek kit as it provides me with a sense of security. I am able to check my INR (blood clotting time) with a prick of the finger. Diet is a big cause for fluctuations, and this can be a problem when travelling. If my blood isn’t thin enough, then I need to inject myself with heparin, which is a short-term blood thinner. I also need to switch to these pre-surgeries or during pregnancy, if ever.

10. Criminal Evidence in My Bedside Drawer and My Mini Pharmacy

nightstand with books and medications and medicine cabinet

Not very smart. Tons of pills for all sorts of purposes – antihistamines, painkillers, pain patches, calcium channel blockers, measurement tools, a bag for waste. It looks like a mini lab in there (housing agents have asked questions about my mini pharmacy, for which I have no simple answer to!).

11. Leftover Scars

scar on wrist

I have a fairly big scar from my mitral valve repair surgery at the bottom of one boob. I’m glad that I didn’t have to do an open heart surgery in the end, and that it’s mostly hidden beneath my clothes. Here’s also another scar from a tenosynovectomy, where they had to remove the tendon sheath from my wrist due to tuberculosis complications.

Both surgeons did a fantastic job of stitching me back up, and I’m grateful to have had them. Some of my dearest healthcare memories were of conversations with them, even though I saw them for only one procedure. I remember my heart surgeon telling me why he decided to go down this path. And my hand surgeon showing me pictures of his gory handiwork with passion-filled eyes. While the scars have faded beautifully, the marks will remain forever.

There are more scars on and inside my body which I won’t show you due to their R21 nature, so we’ll stop here. What other signs do you have that are there, yet can be easy to miss out if people don’t stop to notice?

Follow this journey on A Chronic Voice.

Originally published: May 28, 2017
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