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12 Visible Evidence of a Body Gone Rogue (Is Invisible Illness Truly Invisible?)

12 Visible Evidence of a Body Gone Rogue

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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Invisible Illness - Is it really invisible? Look at some evidence and decide for yourself...

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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Traces of a Body Gone Rogue

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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Is Pain Ever Truly Invisible?

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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Photo Evidence for a Body Gone Rogue

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.

Hair loss from meds - achronicvoice.com
Hair loss from meds - achronicvoice.com

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.

Brain and head inflammation from lupus and sjögren's - find out ore at www.achronicvoice.com

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.

Inflammation from sjogren dry eyes - find out more at www.achronicvoice.com

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.

Inflammation in small joints and hands from lupus and sjögren's - find out more at www.achronicvoice.com
Kefentech anti-inflammatory plaster for lupus and sjögren flare - find out more at www.achronicvoice.com

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Inflammation Overload - But Can You See It?

Bleeding that Takes a Day to Staunch

I have a blood clotting disorder called Antiphospholipid Syndrome, and take a blood thinner medication, warfarin, to prevent blood clots.

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.

Bleeding that takes a day to stop, due to warfarin (blood thinners) for antiphospholipid syndrome - find out more at www.achronicvoice.com

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.

Bruse from taking warfarin (blood thinners) for antiphospholipid syndrome - find out more at www.achronicvoice.com

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.

Lying down in pain at the dentist's - read more at www.achronicvoice.com

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…

My daily medication cocktail - find out more at www.achronicvoice.com

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My Daily Chronic Illness Cocktail (The Not so Tasty Kind)

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.

My coaguchek XS machine - read more at www.achronicvoice.com
My heparin injection - read more at www.achronicvoice.com

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.

Drawerful of meds at my bedside table #besideChronicBeside - read more at www.achronicvoice.com
My 'mini pharmacy' for chronic illness at home - read more at www.achronicvoice.com

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The Glaring Evidence of Invisible Illness

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.

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.

My tenosynovectomy scar - read more at www.achronicvoice.com

In Conclusion

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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12 Visible Evidence of a Body Gone Rogue (Is Invisible Illness Ever Truly Invisible?)

12 Visible Evidence of a Body Gone Rogue (Is Invisible Illness Ever Truly Invisible?)

Body Gone Rogue - What Does That Look Like?

    For More Insight:

  1. Living with invisible illness and the challenges it poses (throughthefibrofog.com)
  2. 15 Ways Anyone Can “See” My Invisible Illness, Fibromyalgia (caseythecollegeceliac.blogspot.sg)
  3. 9 Ways You Can See My Invisible Illness, Celiac Disease (caseythecollegeceliac.blogspot.sg)
  4. 22 Photos of How Illness Changed People’s Bodies (That They’re Not Hiding Anymore) (themighty.com)
  5. Just Because You Can’t See it, Doesn’t Mean It’s Not There! (balancedandblissful.com)
  6. What’s Really Behind an Invisible Illness (fightingwithfibro.com)
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30 comments

  • Avatar of Lucjan

    Your body may break but your spirit NEVER does!

    My heart goes to ALL chronically ill women. Regardless of your chronic condition, big or small, you are invisible to others…

    …especially to MEN!

    Men need to men up and help women with their struggles. There’s still a normalization of “female issues “, and it frustrates me to bits!

    Male doctors ignore women, their problems are swept aside. Women suffer and seem to be invisible in men’s eyes, their problems are invisible, their pain is invisible, their illness is invisible, and the list goes on…

    Men need to combat other men who neglect, and willingly or not, hurt women. Men should rise above their pride and delusional ideas.

    So to I bow to those gents who care, who support, and who spread awareness about the issue of invisible women and invisible illness.

    • Avatar of Sheryl Chan

      Thank you Lucjan. Also for all you do to raise awareness of endometriosis, and fight on our side. You are very much appreciated! 🙂

  • Avatar of Mother Wintermoon

    As a person with chronic auto-immune diseases, c-ptsd and multiple hospitalizations I can woefully relate! I’ve lost over half of my hair. It would grow back, then BAM! — another medication, flare-up or major surgery would cause it fall out again. Sending abundant love and many hugs your way…sister in spirit. 🙏

    • Avatar of Sheryl Chan

      Thank you for your comment. I know… doctors and people think hair doesn’t matter. That it’s just hair, it’ll grow back, that it’s superficial. But no. It impacts self-esteem especially for women a great big deal. I love my hair (in all its fine, limp, mousiness). I don’t want to go bald.

  • Avatar of Melissa

    There are so many not-so-invisible signs of chronic illness. My biggest one is the way I walk. My gait has been really affected by my spinal problems. I can only take very small, sort of shuffling, steps. My bottom kind of sticks out, too, so with my cane I really look like a cartoon of an old lady.

    • Avatar of Sheryl Chan

      I am sorry to hear that Melissa 🙁 I have a friend who has a funny gait too due to a car accident. And sometimes people on the street stare at her, so I stare back. I don’t get it. Is it that ‘fascinating’? People are strange.

  • Avatar of the joyous living

    oh gosh — my hair is constantly falling out too! i thought it was just me. my hairdresser will also do special vitamin deep washes yearly to help remove the chemical buildup in my hair from the medicines.

    • Avatar of Sheryl Chan

      Haha not only you! A hair is a woman’s pride! Yes I also go for hair loss treatment, and it seems to help quite a bit!

  • Avatar of Despite Pain

    Like you say, is pain or illness ever really invisible? Even when there are no actual visible signs, you can often see it in someone’s eyes. For me, my visible sign is one I’ve gone through my life wishing was completely invisible. I have scoliosis and had always tried to dress to cover it, but it’s not easy unless I’m wearing a NASA spacesuit lol. On bad pain days, nothing can disguise my shape. On better pain days, I think to myself that it can’t be seen, then a stranger gives a sympathetic look and asks if I’ve got a sore back. I used to be embarrassed by that. Now, I see it as an awareness exercise lol. I also appreciate those people because they are demonstrating empathy.

    Your mini pharmacy is quite impressive. And it even stocks Baileys!!

    • Avatar of Sheryl Chan

      I am sorry to hear that, Elizabeth 🙁 Yes I think at this point, I’ve gotten used to being visible when it does become visible. I just limp if I need to, lie down where I want… becoming a cranky, eccentric old lady 😉

      Haha it was the ex’s booze stock. But it goes nicely with the mini pharmacy, don’t you think?!

  • Avatar of Claire

    Oh there are so many signs of chronic illness aren’t there. The dark circles under my eyes is probably the most obvious for me, but also scars from injections and cannulas etc. So many things, but perhaps others don’t see them clearly as we do.

  • Avatar of Carrie Kellenberger

    I related so hard to this post, Sheryl. Amazing that I haven’t seen it before because I’ve read almost everything on your site! One of my telltale signs is that I’ve got my arms wrapped around my body like I’m holding myself together. You can tell just by how I’m sitting. Thank you for sharing and being so brave and upfront about everything you live with, Sheryl.

    • Avatar of Sheryl Chan

      Thanks Carrie. For sure the signs are there. What’s funny is that this is the only post on my site that has been flagged as containing ‘shocking content’ so ads don’t show on this particular page. Our lives must be really shocking to viewers :p xxx

  • Avatar of Shruti

    You know, I think it’s incredible – the sort of issues chronic illness throws up and how resilient you need to be to keep doing what you need to despite the constant setbacks which may not be obvious to the average person.

    I’m so glad you’ve written about these signs – I’m beginning to realise how much we ignore (try to at least).

    Thank you for sharing this – more strength and love to you Sheryl.

    • Avatar of Sheryl Chan

      Thank you so much for your support and kindness Shruti, I appreciate it 🙂 Yes it does take quite a bit of effort and we often don’t even realise it as we trudge on. Sending love to you on your journey, too. May it be a peaceful one, as much as is possible 🙂

  • Avatar of Emma England

    Thank you for sharing this. It’s very brave of you, and I imagine it wasn’t easy. It does a fantastic job in raising awareness of how much hidden pain there is in invisible illnesses. I’m sorry you have so much to deal with x

    • Avatar of Sheryl Chan

      Thank you Emma! No it wasn’t easy as I hate plastering my face all over the internet haha. But I think it helps when there are visuals to it 🙂 Thank you so much for dropping by and sharing! x

  • Avatar of Micki Hogan

    This is an excellent post that really speaks volumes to how invisible illnesses are actually quite visible. Will be sharing the heck out of this article!! Great job lady!!!

  • Avatar of Liberty

    I am sorry you have to deal with all these, I can also relate a little, the cracked lips are the worst they look awful and are painful! take care xx

    • Avatar of Sheryl Chan

      Hi Liberty,

      Thank you for your empathy. Life is still manageable so no worries! Just wanted to raise awareness using photos, because pain is never fully invisible if a person really pays attention (e.g. emotional pain) 🙂 Take care and hope you have a wonderful day!

  • Avatar of Layla

    So sorry you have to deal with all these! I found the hair loss the worst, although mine has stopped a while ago I have not that much left and it’s really lowering my self esteem!

    • Avatar of Sheryl Chan

      Yes, I find the hair loss worst too! It really does lower your self esteem a great deal, and the cruellest thing is when doctors or friends just go, “stop being stupid, it’s just hair” 😉

  • Avatar of Caz

    Great post, and many of these I can really identify with. I didn’t know about the pigment issue (no.6) with Hydroxychloroquine – I’ve been taking it for just over 2 months now, hoping it has some benefit in the upcoming months. Have you noticed any improvements regarding your Lupus since taking it? x

    • Avatar of Sheryl Chan

      Hi Caz,

      Glad it’s relatable! 🙂 As for hydroxychloroquine, I’m surprised the pigmentation issue is pretty unknown (another reader also mentioned the same problem). Maybe it is more common in Asia, I’m unsure, but my doctor knew right away what it was.

      As for whether it helps with the Lupus, I’ve been taking it over a decade so probably. Exactly how, I’m not sure 😉 My doc says it’s one of those drugs that’s good to just maintain there for Lupus because apparently it does help. I hope you’re not having too many side effects! x

      • Avatar of Caz

        Thanks for the reply. Just wanted to let you know I’ve been taking it for maybe 2 months or a little more now and aside from the initial mental side effects (counteracted now with Citalopram, though the rheumatologist said she didn’t think depression or anxiety or anything similar was a known side effect!) I’m doing okay on it. Can’t say I can see any benefits yet though, but I’ll keep my fingers crossed. Perhaps with the pigmentation it’s just a case that it’s not brought up as a possible side effect, and I haven’t gone looking for that issue online, though I’m sure that if I did I’d find plenty of information and experiences from others who have dealt with that side-effect. In general, when getting medication in the UK we seem to very rarely, if at all, be made aware of any side-effects! x

    • Avatar of Sheryl Chan

      Hi Caz,

      Seems like many people in the U.S. don’t know about the hydroxychloroquine pigmentation issue…I’ve had quite a few people message me about it! My doc picked it up immediately, maybe more common side effect in Asian women? I’ve been on it for a decade maybe so I don’t know…but I’m still on a fairly high dose of steroids as well all this time. My doc said it’s a good drug to keep in the cocktail regardless. I hope it works for you!

  • Avatar of Magic Miss Bri

    Stuff that looks like really bad acne in my face, but it’s the malar Lupus rash. The Frankenstein-esque scar across the front of my neck from a C6-C7 vertebra fusion, my walking away or trying not to breathe when those Wal-Mart perfumes are around me and my making my own laundry detergent (chemical sensitivity), not wearing bras and wearing a lot of Jersey cotton (due to tightness and pain on skin), never wearing high heels and mostly wearing slip-on shoes (easier to deal with in pain).
    SLE and Fribro, plus a myriad of side conditions sufferer.

    • Avatar of Sheryl Chan

      Exactly…ways we need to skirt around everyday life but are unseen, or misunderstood. Would be interesting to see your photos and explanations somewhere (although I totally understand if you don’t/can’t share…was just curious) 🙂 I hope you are having a decent day! x

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