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11 Visible Evidence of a Body Gone Rogue

10 Visible Evidence of a Body Gone Rogue | A Chronic Voice

*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

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!

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

2. 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. 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.

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

3. Eye and Lip Inflammation

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 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

4. 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

5. Bleeding that Takes a Day to Stop

I have a blood clotting disorder (antiphospholipid syndrome), 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.

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

6. Bruises from Blood Thinners and Medications

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.

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

7. A Secret Lie Down in Public

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.

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

8. My Daily Cocktail

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.

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

9. My 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

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

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!).

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

11. 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

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?

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    For More Insight:

  1. 15 Ways Anyone Can “See” My Invisible Illness, Fibromyalgia (article on caseythecollegeceliac.com): https://goo.gl/kD1ofs
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Chronic illnesses are known to be invisible, because the person can look fine despite being in great pain. Yet, there are always clues left behind... - Click to read or pin to save for later - www.achronicvoice.com

12 comments

  • 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!!!

  • 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

    • 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!

  • 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!

    • 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” 😉

  • 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

    • 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

      • 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

    • 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!

  • 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.

    • 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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