The invisibility of chronic illness makes it incredibly frustrating. We look healthy, yet the pain under our skin can be excruciating. But is pain ever fully invisible? Painkillers mask the evidence of chronic pain somewhat, yet they often provide minimal relief. A body gone rogue is not easy to tame. And taming it requires a surprising element of trust.
*Trigger Warning: This post contains images of blood, needles and flesh. Don’t worry, they’re not that gruesome 😉 But if such images trigger you, please do not continue. Thank you and sending well wishes.
First Published on: 15 May 2017
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Traces of a Body Gone Rogue
If you pay enough attention, you will notice the little clues of a body gone rogue. Imprints of pain that the owner is trying to conceal, but there’s always a little something left behind.
Maybe it’s the dark eye bags or bloodshot eyes. The dried, cracked lips, swollen fingers or bloated tummy. You know, the areas of a person’s body we generally pay less attention to. We tend to only notice the over all shape of the body or hue of wellness.
Maybe it’s that constant look of fatigue, which you’ve already associated as part of their ‘normal’ appearance. Or the remnant wounds from scabs that never seem to heal. Maybe you’ve dissociated those minute actions we repeat; the unconscious rubbing of our belly, squinting, blinking, shaking our wrists. It’s there.
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When People Presume You’re Just a Cold, Hard Bitch
Sometimes you don’t need to use your eyes, but your ears to hear the agony. More often it’s about what you don’t hear. I tend to withdraw into silence when I’m in pain.
Back in school, friends would often ask what was wrong, whilst other classmates would just assume that I was a cold, arrogant bitch. They thought that I had found the conversation topics boring.
In actual fact, I was concentrating hard on being present despite the amount of pain I was in. The best thing they could do for me was to carry on as per usual, and allow me to participate in my own way.
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Photo Evidence for My Case of a Body Gone Rogue 😉
These are little signs that you usually wouldn’t notice unless you live with me, or if I bring them up first. There are inconspicuous, until they ruin me enough to be obvious. Often, that is an emergency situation that requires hospitalisation.
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Heartbreaking Hair Loss
My hair was falling out in bunches and clumps every day for a period of time from medications. I was on sodium valproate (Epilim) to control my epilepsy, and this wasn’t even supposed to be a ‘normal’ side effect of the drug.
These pictures do not include all the loose strands scattered and floating around the house. Wherever I went, I left behind some of my hair. It was frustrating to see yet more hair on the ground, right after I had mopped up even!
When I first posted about this to Instagram, some African-American girls rolled their virtual eyes at me and said that this was nothing; that it was their norm. But I’m Asian with stringy, mousy, fine limp hair. So that is indeed, a big bunch, pun intended.
Pesky Head and Brain Inflammation
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 (SLE).
Sometimes this goes into overdrive and bulge out in swollen lumps all over my skull. My hair hides most of them, but I can’t do anything about the reddish bumps visible 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.
Embarrassing Eye and Lip Inflammation
I had to stop wearing contact lens so frequently due to dry eyes from Sjögren’s Syndrome. No matter how much I moisturised them, it still 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 as it makes me look like a freak, and I can’t conceal it.
Warning Inflammation in my Hands
My hands are a favourite 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.
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Bleeding that Takes a Day to Staunch
This ‘fix’ helps with preventing strokes, heart attacks, DVTs, pulmonary embolisms and other life-threatening medical conditions. But the downside is that my blood is ultra thin, so bleeding from cuts or wounds can take a long time to staunch. Clean cuts are the worst. I’ve had paper cuts that have taken 24 hours to shut their gaps.
I am aware of the fact that I can bleed to death rather quickly in a major or even minor accident. In fact, I’ve had several near-death encounters from internal haemorrhages from ‘normal’ bodily functions, which you can read about in the related posts below.
Abusive-Looking Bruises from Blood Thinners & Pets
As you know by now, I am on blood thinners for APS, which also makes it way too easy for me to get bruises. A light bump, pinch or punch can add a new bruise to the endless collection. I’m often surprised to find a new one hidden somewhere on my body.
Recently with my new puppy, it’s been worse as well. He’s a bit of a biter and chewer even though his baby teeth have all grown out. And he’s got all that sheepdog energy which he happily takes out on me. I mean, look at the pictures and you’ll see what I mean. People often ask if I’m being abused.
Ugly Pigment Discolouration from Medication
My shins are covered with a different kind of pigment discolouration, which can sometimes be harder to differentiate to the untrained eye. This is a side effect from taking hydroxychloroquine, which is a staple drug for many people with Lupus and Sjögren’s Syndrome due to proven efficacy rates.
Sneaking in a Secret Lie Down in Public
Here’s me at the dentist, curled up on the couch as there was no one else there. I had ground off half a molar tooth (!) from my TMD and bruxism issues the night before. So I had no choice but to be there despite having a terrible day. When I walk out of the dentist’s, nobody would even know that I had been in severe pain.
My Daily Medication Cocktail (Not Very Tasty)
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.
P.s. It’s been a few years so that cocktail’s changed again. I’ll lay out the new mix someday…
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My Life-Saving Heparin Injections & 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.
Glaring Criminal Evidence in My Bedside Drawer & My Mini Pharmacy
Not very smart. Tons of pills for all sorts of purposes scattered everywhere. Common ones more accessible in the upper drawer, and less used ones below. Sometimes scattered on the table for emergency purposes. Always a bottle of water in case I need to swallow some pills.
Antihistamines for urticaria/hives and itching. Painkillers for all sorts of chronic pains. NSAID pain patches for inflammed joints and muscles. Calcium channel blockers for arrhythmia/irregular heart rhythms. Measurement tools to test my blood pressure and blood clotting times. A plastic bag for waste and in case I need to throw up.
Various anti-anxiety medications for different purposes – panic and anxiety attacks, and for the occasional messed up sleep due to hyperactivity from my steroids or from painsomnia. Ironically, I also keep more prednisone/steroids in my drawer. They’re necessary for when an unbearable pain flare strikes, one where even strong painkillers do jack shit.
It looks like a mini lab in the store room. Housing agents have asked questions about my ‘mini pharmacy’, for which I have no simple answer to. There’s more medication in the kitchen of course; liquids that need to be poured out, or those that need mixing with water for effervescence.
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Bits & Pieces of Leftover Scars
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.
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 😉 As you can see however, a body gone rogue can be a very subtle thing.
But if you view the world around you through empathetic and observant eyes, you will notice how many stories there are waiting to be told, both happy and sad. Life can be tough as it is. A little more kindness, thoughtfulness and willingness can go a long way.
What other signs do you have that are there with chronic illness or disability, yet can be easy to miss out if people don’t stop to notice? I would love to hear what you have to share in the comments below!
*Disclaimer: This article is meant for educational purposes and is based on the author’s personal experiences. It is not to be substituted for medical advice. Please consult your own doctor before changing or adding any new treatment protocols.
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For More Insight:
- Living with invisible illness and the challenges it poses (throughthefibrofog.com)
- 15 Ways Anyone Can “See” My Invisible Illness, Fibromyalgia (caseythecollegeceliac.blogspot.sg)
- 9 Ways You Can See My Invisible Illness, Celiac Disease (caseythecollegeceliac.blogspot.sg)
- 22 Photos of How Illness Changed People’s Bodies (That They’re Not Hiding Anymore) (themighty.com)
- Just Because You Can’t See it, Doesn’t Mean It’s Not There! (balancedandblissful.com)
- What’s Really Behind an Invisible Illness (fightingwithfibro.com)