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.

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When You're Too Sick to Go to the Doctor

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This has been on my mind a lot recently because I’m in this situation again. Also, I think most people (thankfully) don’t truly understand this.

I’m talking about is when you are literally too sick, in too much pain, to go to the doctor. It’s a horrible situation, but almost laughable in how absurd it sounds. But it happens. Just like there are times when you’re too sick to go to an event, or to have a bath. Or to walk to the kitchen.

I think most people know what it’s like to feel lousy, to cancel plans because they just don’t feel up to it. They decide they need to take care of their flu, cold or infection of some sort. But, if they had to, they could physically do it – they would just feel crappy doing it. It would be hard.

But, there are people, who, when they say they can’t go, truly can’t go. No one wants to go to the doctor, but you drag yourself there because you need to get better. You need antibiotics. Or some other medicine or test.

But, right now, I have a tooth infection. It’s an infection I’ve already taken and finished antibiotics for, and it’s not better. I would love to and I need to see a doctor. But, I have a kidney stone that decided to move into a really painful spot. It is causing me so much agony that even my hardcore pain medication can’t put a dent in it. I can’t walk. I can’t sit straight. I can’t lay down. I’m remaining in this odd, slouchy position, and if I stay completely still, I can sort of cope.

I’m dirty. I’ve been sweating and I smell sick. I need a bath. I really need a bath or a shower. But, that’s not a possibility for me right now. I can’t raise my leg without experiencing agony that I can’t describe. I can’t do it. I can’t do the movements required to get into the tub or to wash myself.

I also can’t fathom being able to get to the doctor, sit in the waiting room, seeing the doctor, going to the pharmacy and then somehow manage to get home. It’s just not something I can do right now.

Yesterday, I had to cancel going to a family event. My significant other went and took pictures so I wouldn’t miss out on all the birthday celebrations. But, me saying I couldn’t go again is me actually not being physically able to go. I hope my loved ones know that I would if I could. I’m pretty stubborn, so I have managed to do a lot of things while in extreme pain. But when pain gets to this level, no amount of stubbornness can make it achievable.

I think most fairly healthy people automatically think, “Well, they could come, but they aren’t feeling well. It’s better if they relax and take care of themselves.” But they don’t realize that it’s actually not a choice made because it’s wise. It’s not a choice at all. It’s just impossible.

Yet, if you tell a friend you aren’t going to the doctor, even though you have a tooth infection, they get upset and concerned, saying you need to go! Yes, I do need to go. But I can’t. And that sucks more for me because I know what my body can do with an infection in a short period of time. It could get really bad. But, the only way I’d be seeing a doctor in this shape is if I called an ambulance. I’m not calling an ambulance unless I’m potentially dying. They can’t help my kidney pain any more than I’m already helping it, and I’m not calling an ambulance for a tooth infection that isn’t horribly abscessed. That wouldn’t go over well with the emergency room at the hospital.

So, I slouch here, at home, hoping my kidney stone will move to a better spot soon, so that I can go to a doctor and get this tooth infection taken care of. It’s all I have right now. Hope. Hope that it improves. Hope that neither my kidney or tooth worsens to the point where I do need to call that ambulance.

The next time someone you know, who has a chronic illness, or chronic pain, tells you that they can’t do something, believe them. It’s likely that they truly can’t.

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Thinkstock Image By:grinvalds

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My Eureka Moment That Convinced Me to Stop Hiding My Illness

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I’m a pro at hiding my pain, my illness. I’ve had a lifetime of practice. Other people are often uncomfortable, unsure of how to act, what to say, around someone who is not well. So, I’ve learned to camouflage my pain. In some ways, I hide it for selfish reasons as well. I want to feel normal. I want to be treated like everyone else. I don’t want sympathy. I don’t want to talk about my illness or about how much pain I’m in. I want to escape it, when I’m out in public. I want to pretend it doesn’t exist.

But, I am a silly human. It hurts, emotionally, when people don’t understand just how ill I am. When they don’t understand why I can’t work. Why I have to cancel so many plans. Why my house is a mess. I’m hurt when they say “you don’t look sick.”

So, I had a eureka moment the other day. Of course they don’t understand! Of course they don’t get how severe my illness and my chronic pain is. I’m doing everything in my power to hide it from them! How could they ever possibly know just how bad it is?

 

It’s my own fault. I can’t have it both ways. I can’t build a brick wall around me and then be hurt by the fact that no one can see through it. They aren’t being insensitive. I’m being unreasonable. I can’t blame someone for not seeing what I’m purposefully hiding.

It’s time for me to be more open, if I want people to truly understand. It’s time for me to stop hiding, if I want people to truly see.

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Thinkstock photo by Tishchenko

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Why Talking About Chronic Illness Shouldn't Be Taboo

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Speak about your or your loved ones’ illness as often as you can. Ignoring it doesn’t make it go away. Not talking about it doesn’t cure it. Sure, you may get tired of talking about it, especially if it’s not getting better. Sure, you may get frustrated, always giving the same answer when people ask how you’re doing or how they’re doing. You may even hope people stop asking.

Here’s the problem I see with not talking about it: you hold everything inside. This alone can cause anxiety, frustration or depression about the illness. Your family and your friends need to know they can discuss it as well. I think not discussing it can make it seem taboo to mention. This can put people on edge around you. They may be afraid they’ll say the wrong thing or ask the wrong question.

A chronic illness may be a big part of your life, but it does not define you.

You never know who else may be suffering too and need to talk about it. Talking about it may drive some people away from you. These people were not your true friends anyway. Chronic illness will filter out your friends, and those who truly care about you will still be there. They are the ones who will ask how you’re doing. They won’t get tired of hearing about it even if your answers never change.

Talking about your illness can be therapeutic. Putting your thoughts about it into words can be freeing. A chronic illness may touch every aspect of your life or your family’s life but it doesn’t change the fact that you are family and you are loved by that family. Invisible chronic illness is hard because no one can see how sick the person may be. Others can’t tell how much pain the person may be in. It’s up to them to let others know.

If you know someone with a chronic illness, ask them about it. Spend time listening to them or their family.

They do not suffer alone; the family is right there with them (read more about the loved ones of those with chronic illness on my blog). It is not uncommon to have lots of offers to help or people asking about it frequently in the beginning. After it has gone on for a while, people may forget and get busy with their own lives. They think the sick person is better if they haven’t heard anything in a while. It gets lonely. The offers for help get more infrequent or go away completely.

I’m not saying that the illness should be the topic of every conversation or that it should be brought up in every setting or the first thing you say when you meet someone. Seriously, if you said, “Hi, I’m Jane, I have…, it’s nice to meet you,” that would be a very awkward meeting. It also tends to lead to the feeling that your illness is who you are. Don’t let it define you, or your loved one, but don’t be afraid to talk about it. It can be freeing!

Are you a friend or family member of someone who is affected by a chronic illness? Do you encourage them to talk about it?

Do you have a chronic illness? If so, do you talk about it?

I would love to hear your experiences with discussing chronic illness.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Maria Kuznetsova

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27 'Habits' of People With Chronic Illness

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Navigating life with chronic illness can be tricky, often requiring a lot of trial and error to figure out what accommodations work best for you. As you adjust to a different lifestyle in which illness is a constant yet unpredictable presence, you may find yourself developing “habits” that help soothe symptoms, distract you from pain or make life as comfortable as possible.

We asked our Mighty community to share some of the “habits” they’ve developed to get through the tough moments with chronic illness. Some of these habits may sound familiar, and others might provide you with some new ideas to incorporate into your routine.

Here’s what the community told us:

1. “I ‘nest’ a lot on bad days. I tuck myself in bed with a mountain of pillows, blankets and heating pads, keep my TV and Xbox controller in hand’s reach, make sure I can reach my phone charger and then eat snacks and drinks in bed all day.”

2. “My habit is a saying that developed after people continuously asked me how I’m doing… My answer is always, ‘Well, I’m still alive.’ I suppose this habit is really part of a larger habit of me trying to be positive and laugh in the face of myasthenia gravis.”

3. “I treat myself to a hot bath every night. I know it doesn’t sound like much, but it’s my ritual. It’s 20 minutes of quiet time to myself. Plus it does on occasion give me some relief from pain.”

4. “Since I am very light-sensitive, I have sunglasses everywhere: my truck, my purse, two or three in my room, two or three more (back-up pairs) in a drawer… and I keep a pair in my office.”

5. “I double calendar everything. I’ve had a lot of problems with ‘brain fog’ and I don’t want to miss appointments or double book. Plus my kids have events and appointments too. So everything goes into my calendar on my phone and onto the wall calendar in the kitchen!”

6. “Sitting down in the shower to shave because it’s easier on my joints. I forget sometimes that a lot of people stand to shave.”

7. “Rocking my body back and forth. Sometimes I don’t realize I’m doing it but it is either because I’m exhausted or I’m overstimulated and need to calm down.”

8. “I turn on the seat heater when I drive. It helps my back and hip pain.”

9. “I start the day watching funny videos on YouTube or Facebook. Anything to laugh. It gets endorphins going and makes it hard to begin the day on a bad note.”

10. “I love to read. It gets me through pain, exhaustion and emotional breakdowns. I always have my e-reader with me.”

11. “Starting in my early teenage years I began an afternoon nap habit as a result of the unrelenting fatigue. I’m 40 now and still take a nap every afternoon.”

12. “When I’m on my cane or in so much pain I’m having trouble walking, I count to either two or five steps, each time telling myself I just have to get to five. So I’ll continue to muster up the strength to walk and it also takes my mind off the pain.”

13. “I have gotten into the habit of recording my pain each day out of 10 in my diary so I can look back and see if what I’m changing in my lifestyle is working.”

14. “A tall glass of red wine every night. It helps the muscle spasms to relax. Plus it has healthy antioxidants.”

15. “Keeping everything together as close by as possible, so as to avoid unnecessary painful movement. Water bottles, meds, snacks, laptop and phone (and chargers), stack of books, blankets, pillows, socks and pajamas are all an arm’s length away from my bed.”

 

16. “It’s perhaps a bad habit now, but putzing on my phone, texting my closest friends and watching DVDs are how I decompress after work. Usually after work I’m burnt out, so nothing gets done on a work day.”

17. “My habit is making sure that on bad flare-up days I have enough to drink and some snacks on my nightstand so I don’t have to get up and down all throughout the day, and so I have enough to eat to take my medication with.”

18. “I always have an earphone in, playing specific artists. I suffer from constant pain, and having music playing stops my sensors from being overloaded. Works really well in large crowds, such as shopping centers.”

19. “I ask myself, ‘Who am I doing/trying to do this for?’ It’s OK to go over the limit of what I should do and pay for it later if it means going to an event I’m really looking forward to or making someone I love happy. But so often I do things because I feel obligated, because I said I might go and feel bad going back on my word… I’ve learned my health is worth more than what others might think.”

20. “I have a habit of collecting my hospital bracelets after I get out of the hospital as it reminds me that I won yet another battle. It seems odd but for some reason I hold onto the bracelet feeling empowered that I walked away from what tried to defeat me again.”

21. “I’ve gotten into the habit of having several pairs of fuzzy socks and pajamas on hand. They keep me warm but not overheated and the socks specifically have a comforting effect.”

22. “Saying what I’m doing out loud so I don’t forget what I’m doing – like if I’m walking down the hallway to put milk in the fridge I’ll say, ‘Putting the milk in the fridge,” or if I’m looking for my keys I’ll keep saying, ‘Looking for my keys’ so I don’t forget what I’m looking for.”

23. “I have a five-year diary that is purely for for writing down one good thing that’s happened each day, however big or small it may be! It might be I managed an evening out one day, or it might be I stayed in bed all day watching Disney movies another. But it forces me to search for the good in every day.”

24. “I bend over when I stand still so I don’t pass out. If I keep walking I’m fine, but if I stop at a crosswalk I have to bend over or I get dizzy and black out due to tachycardia (POTS).”

25. “I developed a habit of not comparing myself and my life to that of a healthy person. I am on my own time.”

26. “I shower at night. Showering takes a lot out of me so I shower in the evenings and I only shower every other day. I use those face wash wipes or homemade wipes the other days to clean myself up a little bit.”

27. “I get up before dawn, walk my dog, feed the cats. Then I watch the sun rise while I take some photos, drink tea, listen to music. Or just take that briefest moment taking in the sunrise. A lot of days start very early with pain and nausea. I needed to reset that so – even with pain and nausea – I can start my days with gratitude and a bit of peace.”

What’s a “habit” you’ve developed due to your chronic illness? Share in the comments below!

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I Won't Apologize for Putting My Health First

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In the face of illness there are many things we may feel the need to apologize for, so let me begin by saying I am sorry.

I am sorry my inability to work or need to call in sick affects you. Imagine the inconvenience it would place on you if the roles were reversed.

I am sorry I cannot attend everything I am invited to; however, my rest and my health are more important.

 

I am sorry we may have lost touch. Staying in touch with my family and myself takes every bit of energy I have.

I am sorry for being honest when you ask how I feel, as you seem to get frustrated when I don’t say, “I’m cured.”

I am sorry for my messy house; I frankly don’t have the energy to keep up.

I am sorry my illness annoys, inconveniences or confuses you. The feeling is mutual.

I am sorry I am chronically ill, but will never be sorry for putting myself, my health and my family first.

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Thinkstock photo via Tishchenko.

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