A Chronic Voice

@achronicvoice | contributor
Hello I am from Singapore, a sunny island in Southeast Asia. I live with a host of chronic illnesses which include Lupus/SLE, antiphospholipid syndrome, Sjögren’s syndrome, epilepsy, and more. I have a gore-tex band for a heart valve, and have forgotten how many surgeries I have had. I want to reach out to others who are suffering in their own way, to let them know that it is okay to feel frustrated, sad and lost. Let us simply get through it together one moment at a time. I blog at: achronicvoice.com, and you can also find me on Facebook, Twitter, Instagram or Pinterest.
A Chronic Voice

Diet Advice You Shouldn't Give People With Antiphospholipid Syndrome

When it comes to autoimmune disorders, one size does not fit all. Even our doctors deal with us on a case-by-case basis: “This drug works for him, but can she tolerate it?” or “It isn’t doing anything for her at all, even after six months.” “This drug is superb for joint aches caused by rheumatoid arthritis! But your white blood cell count has been flaky from Sjögren’s syndrome, so we’ll have to stop using it.” “This is the latest drug that has worked for almost all our patients, but it costs $10,000, and there is no guarantee it will work for you too.” It isn’t quite like a cough or a sore throat, where you go to the pharmacy to get the same prescription as everyone else. Even patients with the same classification of illness might not understand the full spectrum of their own disorder. For example, there are actually four different types of Lupus and hundreds of different symptoms. It might destroy the kidneys of one person, but for someone else with the same disease, his skin might be affected instead. Each of these parties may never understand what it feels like to be in the other person’s shoes, despite being diagnosed with the same disorder. I’m sure almost everyone with a chronic illness has a pet peeve. Mine, hands down, would be health advice given by acquaintances who have no idea who you really are as a person, what you do on a daily basis or the specifics of your disorders. They dispense advice for exercise but are not there beside you in the mornings when you’re struggling to sit up in bed. Or maybe you’re already doing more exercise than them, despite your pains. I’ve had many people enthuse about magical beans and seeds or suggest I go vegan. This can be little tricky when one has APS (antiphospholipid syndrome), a disorder where your blood has a tendency to clot. The blood thinners I take require close monitoring of the foods I eat — variations in my diet could, quite literally, increase the risk for blood clots that could kill me (hence the title of this piece). I once ate a plateful of quinoa and woke up to a giant bruise covering half my arm. Who knew that a non-green food would be that dangerous? I discovered that while quinoa in itself does not contain vitamin K (the vitamin which helps with blood clotting in a normal person but must be controlled in APS), the shell enclosing it contains saponins, which triggers blood thinning instead. Anyway, who knew a plate of organic, healthy stuff wasn’t so good for me? These days I am trying to understand the perspective of a “healthy” person a little more. I put myself in their shoes and ponder, “How could they possibly understand? I can’t blame them for that.” My psychologist has also played a key role in my journey towards psychological healing for the past year, and presented this issue to me in a different light: while you are not their number one concern, their thoughts are still coming from a good place and their intentions are not malicious. This thought calms me down, and I smile, nod and meditate on it whenever someone comes along and does just that again. I try to listen — perhaps they actually do have something new I could consider. If not, I try to let the comments slip off before they permeate the barrier of my mind to trigger anger… or maybe I am just getting older. Editor’s note: This post is based on an individual’s experience and should not be taken as medical advice. Please see a professional before starting or stopping a diet regimen.

A Chronic Voice

When People Don't Understand Your Arthritis Pain

Many conditions of chronic illnesses are often glossed over because they do not sound that painful or difficult to deal with, and the person may even look well. Are they just being “lazy” and “faking it”? Prior to experiencing these symptoms for myself, I might have been guilty of certain ignorant and unkind thoughts within the privacy of my mind. 1. Joint Aches “It’s one of those little things that old people complain about. It’s just an ache, not even a ‘real’ disease, how bad can it really be?” That was before I developed rheumatoid arthritis and learned just how terribly wrong I could be. I learned that it isn’t just a “little” pain, but a debilitating one. Your elbows, knees, wrists, ankles and all other joints can puff up into a sensitive, red swell, where the slightest alteration of angles, an accidental brush against any surface or doing tasks such as fastening your bra can trigger intense pain. Forget about “light” exercises — you might have trouble even walking to the bathroom. Someone I know suffered these horrid aches for four years, and she had to go up staircases by sitting and pushing herself up one step at a time, every day. 2. Muscle Aches “Is it like a muscular ache you get after exercising?” This is the most common question I get from curious friends. (Thank you for asking!) “That muscular ache can feel quite good, actually!” Unfortunately, this muscular ache does not feel good in any remote sense of the word. In fact, for me it is worse than the joint aches. But what does it feel like? In all honesty, it feels as if there are thick nails pounding through my muscles deep into my bones, relentless in their drone-like repetition. It is severe enough to keep me up all night. 3. Dry Eyes and/or Mouth You’d probably imagine this to be more of an annoyance than anything else, but it can actually make a tremendous impact on the quality of your life. Having dry, inflamed eyes is like having sand scratch against my eyeballs all day long. I used to bathe them in eye drops from morning to night, but the relief provided only lasted for that brief moment of contact. Having a dry mouth is a bigger torture to me — a million tiny pins piercing through the surface of my tongue, throat, cheeks and lips, with a burning sensation, as if sucking on chili, thrown in for good measure. Who would have thought that one’s moisture level, which seems like something that could be easily restored either through natural or artificial means, could be so deceptive in its ability to cause pain? It is not uncommon for me to be kept up by such conditions late into the night, and if I do manage to drift off to sleep, it’s usually from the exhaustion that comes with enduring too much pain. To those of you who can relate, what other symptoms or side effects did you think were “not such a big deal” prior to experiencing them personally? And to those who are curious about other symptoms — what else would you like me to try describing? Follow this journey on A Chronic Voice. The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines. Lead photo source: Thinkstock Images

A Chronic Voice

Telling Someone With Chronic Pain to 'Think' or 'Stay' Positive

I don’t know about you, but for me, there is a difference when someone tells me to “think positive” as opposed to “stay positive.” The former implies an undermining of suffering, while the latter tells me that you’re on my team. Perhaps I have a case of word oversensitivity, but I’ll go ahead and tell you more. The Evolution of Thought When in Pain When I’m in the grips of pain, all I want is freedom from it. When you struggle with pain over a prolonged period, the idea of freedom evolves along with it. Perhaps it began with “I need some painkillers” to “I need surgery” to finally become “I want to die.” Every action is a compromise with yourself. Another keyword difference here is “I want” versus “I wish” to die. I have no desire for death, but at this point it seems like a better option than suffering. If there’s a hell, might as well get on with it. Encouragement to Stay on Course When you ask me to stay positive, it almost feels like you’re a teammate who’s reminding me to stay focused. To keep my eyes on the “lifetime” destination, and to stay on course. There is a subtle acknowledgement that you believe in my pain, and that you’re encouraging me to remain positive despite it. “Stay, don’t go” versus “You’re being negative which isn’t good. Think better thoughts.” Belief in someone else’s pain is very important; it provides them with a sense of relief because it acknowledges the reality of it. It’s not in their heads, it really is that bad. You can only go about solving a problem when you realize it exists, and isn’t a fiction of imagination. Beyond Words Most people don’t mean you harm when they send their regards. They may not know how to respond because they’ve never had to go through anything like it, and therefore are unable to relate. Perhaps this word difference doesn’t mean anything to you – maybe they both invoke anger or sadness, or you like using them interchangeably. But my intention for today is simply to bring about an awareness that what you say has power; it can lift a person up, or cut pretty deep. And perhaps more than what you say, how you say it and where it’s coming from matters most at the end of the day. So if you’re trying to comfort a friend for whatever reason and don’t know what to say, you can’t go too wrong with a sprinkle of empathy and sincerity. If you or someone you know needs help, visit our suicide prevention resources page. If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255. This article originally appeared on A Chronic Voice. We want to hear your story. Become a Mighty contributor here.

A Chronic Voice

Photos of Invisible Chronic Illnesses and Medication Effects

*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. 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. 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, and I can’t conceal it. 4. Inflammation in my Hands 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 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 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 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 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 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 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 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. We want to hear your story. Become a Mighty contributor here .

A Chronic Voice

Celebrating Your Birthday With Chronic Pain

I was home on my 19th birthday, miserable and unwell, when there was a cautious knock on my door. I opened it to stare into the faces of my schoolmates before spotting the mastermind  – my good friend Eunice. I let them into my messy apartment in my crumpled pajamas, and we sang happy birthday to the girl who wanted to throw up on her cake. The presents were fabulous because they were so thoughtful. I’m sure many teenagers dream of being in a band, and I was no exception. They delivered a rare, left-handed bass guitar right to my doorstep, complete with amp and wires. To top it off, they threw in an acoustic guitar, because choices are good, right? So now I had two guitars, when one was more than enough for my tiny hands. Eunice also planned two other surprise birthday parties for me with more fabulous gifts. I owe my memories of turning 21 on the beach to her. She had managed to gather my good friends from all walks of life, and the beautiful Calvin & Hobbes collection they gave me is still treasured to this day. (If you like, I can give you her number for a small fee.) Then there was the time I planned my own 27th birthday party. You know, a few easy drinks after work at a relaxed Spanish bar. Isn’t that what “normal” people do all the time? What could go wrong? Apparently, everything. I realized that for me, strong painkillers are just expensive Tic Tacs. The full-blown chronic pain experience was going to induct me as a permanent member that night. So I went to work with a flare, and by 7:00 p.m. I felt bushed. But it was my birthday, damn it! I wasn’t going to let a little pain dictate my life! I have pictures from that day of me with a big smile looking happy. Pictures speak a thousand words, my ass. The night went downhill at top speed, as it tends to do come nightfall. I went to sit near the bathroom, pretending I was waiting for my turn. After another torturous hour, I knew I had to leave my own party or risk breaking down in front of everyone. By then it felt like there were thick nails pounding through my muscles deep into my bones, throbbing in dull monotony. I rubbed my flesh until it turned a raw red. This incident is where my phobia of being stuck in town late on Friday nights comes from. There I was, hunched over the sidewalk in agony, while my friends, Shree and Sacha, attempted to hail a cab. After another long hour and a nasty run in with a careless driver, cost no longer meant a thing and I booked a black Uber cab. (It was still new back then, so that was all they had.) Homewards we rolled, looking all fancy. People staring from the outside had no clue how much pain I was in. Being at home provided no relief, except for the freedom to sprawl on my bed in unglamorous positions, bawling like a baby. My mother and sister fetched endless tubs of ice-filled water and massaged my sore arms. I remember sobbing and begging, “Mommy, help me. Help me, please!” But there was nothing she could do, and I could hear the heartbreak in her voice. I can’t remember, but I believe we went to the hospital that night. My most memorable birthday, for sure. Come to think of it, the birthdays I remember in technicolor detail are those where I was in significant amounts of pain. Where time slows to a crawl, and you soak every second up like a sponge. Where my friends showed me what true friendship is about. Where false countenances are all put aside, and people are kind and sincere. Now that the pain has faded into a pale imprint in my mind, those are my favorite birthday stories. This post originally appeared on Medium as part of a #100WritingDays project. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via shironosov.

A Chronic Voice

How to Respond to 4 Challenges of Having Weak Immune System

There are many things that healthy people do because, well, it’s pretty normal to do so. Yet such actions might be detrimental to a person with a compromised or weak immune system. This includes people with chronic or terminal illnesses, the young, pregnant and old. Not all the following scenarios are wrong per se, and I am not trying to create hostility or ask for preferential treatment. But we do come into contact with all sorts of people every day, who influence us just as we impact them. Often, we are not even aware when this happens. With so many problems existing in our world already, it wouldn’t hurt to be a little more understanding. 1. Sick Colleagues or Germ Carriers in Public Places Scenario: Colleagues who come into work coughing and sneezing, or carrying some other spreadable virus. Perhaps they don’t have much choice because there’s lots of work to get done, or an important meeting to attend. Unfiltered First Thought: “Oh sh*t. Why are people so inconsiderate? He should be wearing a mask! That’s how viruses spread, what with all the windows closed and human germ transport systems everywhere. Would it be rude if I gave him a mask? Or maybe I should wear one to protect myself? But wait… why do I have to do that when I’m not the one at fault?!” What I Proceed to Do: Hold my breath every time I hear him cough or whenever he talks to me, as some sort of imagined psychological defense. Hope that the germs disperse as soon as possible. Why the Drama? Well, I’ve contracted tuberculosis once, although everyone around me was disease-free. The doctor said that I probably caught it just by walking past someone who had coughed on the street. It was a miserable experience that lasted for a year; I was in the hospital every other day for reactions to the medications. Even if it’s just the common cold, people like me take twice as much time to recover. Moreover, the flu can also be dangerous for pregnant women. What They Can Do: Be a good citizen, and I recommend wearing a mask for the sake of everyone else around you. Even a healthy person can catch it. A virus does go viral after all. Or better yet, rest or work from home; allow your body to heal! What I Can Try Doing in Future: Just go up, give a polite tap on his shoulder, and practice my diplomatic skills. I am sure many others around us would be grateful, if he prioritized his health first too. Doing so actually maximizes efficiency, if work is your aim. 2. Sharing Food With People Who are Sick Scenario: Girlfriends meet up and order a ton of deliciousness to share. One of them is down with a cold, or something similar. Forks stab into cakes and spoons stir the dishes, mixing everyone’s saliva up. Unfiltered First Thought: “Smile. Take part in the conversation. It shouuuuld be fine! Try to scoop from the other corner. Remember where their spoons have been. Avoid the area. Act normal, don’t be a drama queen!” Why the Drama? With all the immunosuppressive drugs we are on, our immune system is in sleep mode. We lack the extra layers of defense that you have, so even mild viruses have easy access into our bodies. What They Can Do: Initiate dividing the food up into portions. I don’t even mind having less for ease of mind. What I Can Try Doing in Future: Just speak up, plain and simple! These are friends I am with, so they should understand. 3. Giving Unsolicited Advice Scenario: An acquaintance asks how your health has been of late (after all these years, you can’t hide your status as “the sick girl”). So you tell them the truth – you’ve not been well. They proceed to give you advice on the best time of day to exercise, suggestions for a complete diet makeover, or some other perfect solution. Unfiltered First Thought: “Sigh. Here we go again. Does she think I’m lazy? Hmm I’m not sure… Does she think that I’ve just been swallowing all these pills with awful side effects, like a good little doctor’s girl? Without doing any research, or trying to find other solutions? Does she even know what’s at stake if I stop these medications?” Why the Drama? No drama here. I usually just smile and nod, chalking it up as their way of showing concern. Even though I might disappear from their mind the moment we disconnect, it is still a good thought after all. Well, unless they keep insisting on you doing things their way, then I put them on the block list of my life. I don’t need the extra stress. What They Can Do: Trust that your loved one or friend has already tried what they could to the best of their ability. Don’t give any advice, especially if you don’t live with them. Do you really know what they go through or do every day? What you see is only a small, controlled fraction of their life. Exercise more? Perhaps they can actually outrun you despite their pains. Go vegan? Do you even know the science behind vitamin K and blood clotting disorders? Of course, if we ask for your opinion, then feel free to give it. We’re all ears. What I Can Try Doing in Future: Not much, it’s a human thing. As long as we exist, this is something that will pop up not just in medicine, but in all spheres of knowledge. I’ll just continue doing what I do – listen to see if there’s anything I can learn from them, otherwise, zone out. 4. Insensitive Comments About How We Don’t Look Sick Scenario: Childish “jokes” at a gathering about your prude, wet blanket personality. Or hurtful comments of how I’m a liar, because I’m too young and look too normal to be that sick. Side note – this one mostly comes from strangers. Unfiltered First Thoughts: “F*** you, you ignorant cow.” (Sorry cows.) Give an icy smile, detach from the idiot, and ignore him for the rest of the duration. What They Can Do: Assume that whatever someone else does or doesn’t participate in is for good reason, especially if you don’t know them well. Do not utter your judgments out loud for now, you might just be making a fool of yourself. Here’s a little secret, too – there is no need to feel awkward or utter polite sympathies around us at all! The best thing you can do is to trust that we can adult. What I Can Try Doing in Future: Actually, I have been speaking up a little more of late, and think that this should continue. Sometimes, insensitive people need a taste of their own medicine, too. And by doing so, I am also speaking up for others who are like me. These are just a few common scenarios, but you can probably spot the recurring theme. You never know how much effort someone else is putting into an activity that may be mindless to you, so I ask healthy people to just be kind. Everyone has their own personal disabilities, so to speak. Your greatest fear might be ridiculous in the eyes of everyone else. Just be mindful that the definition of “normal” can vary and that simple awareness can make a big difference in the world we live in. Also, my potential responses are just that – possibilities. Things can change, and it doesn’t have to be how you react to situations either. Put your own spin on things, do it your way, and according to your needs. The main aim should be constructive education (well, most of the time at least!). Often people mean no harm, yet ignorance in itself can be harmful. This post originally appeared on A Chronic Voice. We want to hear your story. Become a Mighty contributor here . Lead photo by Thinkstock Images

A Chronic Voice

Importance of Writing About Illness and Personal Challenges

It Makes Me Uncomfortable To be honest with you, revealing so much about my private life makes me very uncomfortable. I often hesitate for weeks before hitting the “publish” button. What business is it of a stranger to have a piece of my life? Why would anyone care about my problems when they have their own? I also fear projecting the wrong image; I am not seeking attention, pity or aid (well, more aid from the government would be nice…). Revealing All Your Vulnerabilities For the World to See To provide insight into life with chronic illness is to put all your vulnerabilities on public display. Granting strangers access to your personal space goes beyond your closest circle of friends and family. It means showing them the fragments of a broken body and the ugly wounds that will never heal. It means revealing just how non-independent you are and how much help you actually need to “adult.” This might become a consideration for a wide scope of activities, from selection as an employee to a travel buddy. Writing forces you to come face to face with the subject on hand, scouring it in search for its essence. You milk it for all it’s worth and package it. You offer it to all passersby for free, with the hope that they will take a sip towards understanding. Blogging about ill health is to set a public alarm clock that reminds everyone of your infirmities, and, in turn, theirs. I do notice that people around me are paying more attention to how I am feeling, and I am deeply grateful for that. Yet at the same time it makes me feel sad that I’m viewed in a light I wish could be brighter. So Why Write at All? Despite all these (maybe silly) concerns, I feel it is an important job. It is something only I and others like me can do, and there aren’t that many of us out there. If not us, then who? Many good people are afflicted; disease does not pick and choose and can strike without rhyme or reason. I write to provoke thought about our humanity, and with that, the need we have for each other in this world. Who else can you turn to, should you be dealt with such a card in life? I hope to contribute to this community that feels like family, and strengthen the safety net to catch those who might fall next. We understand pain and just how bad it can be. We need to write to raise awareness on silent disabilities. There are too many “normal”-looking people who are struggling with circumstances beyond their control to ignore. We need to write in a bid to forge a more harmonious society. We need to serve as living reminders that we are all the same deep inside. We need to write to encourage thought and empathy for everyone around us and to learn to make less ignorant judgments. I need to write because I can. Because some of those like me cannot and are unable to express their pain. I write so that loved ones who want to understand can begin to understand. I write in hope of a better world to live in – for the healthy and ill alike. Utopia might be impossible to achieve as a constant or final state, but even a glimpse of it can change the world. And guess what? This power is inherent in you and me. This article originally appeared at: A Chronic Voice. We want to hear your story. Become a Mighty contributor here. Image via Thinkstock.

A Chronic Voice

Lesson Learned From Having Chronic Pain

A question on Quora got me thinking: “What does one learn by having chronic pain?” Chronic illness turns your world upside down, and it’s impossible to look at it the same way again. The Fragility of Mankind I think the biggest realization that dawned on me is how fragile human beings truly are. There is a subtle arrogance when one possesses a body that is free of ailments. You feel invincible; that as long as you have enough willpower, you can conquer the world. That as long as you push yourself hard enough, you will get what you want. That you can fuel your system with caffeine and work round the clock, denying the infirmity of sleep to achieve “success.” I think this arrogance becomes a norm that permeates into every aspect of our lives, from relationships to work. You think you have time, and you have no concept of dependence. What is “the end?” It is incomprehensible when you are feeling so fine. Why would you need help? Ego is a great manager and has everything under control. When you live with chronic pain, you come face to face with mortality on a daily basis. The end never feels too far away. You will need help in one form or another, whether you like it or not. If not of a physical nature, then moral or financial. You will realize how little it takes to break the human body; yet you will also realize how much life there is in one single breath. There is No Answer The idea that “you will never recover” is foreign. When illness or pain wrecks you, you know it will pass. This knowledge grants you some strength and comfort. But chronic pain has no beginning or end; it is part of the world we live in. It runs smoothly in parallel to the world of healthy bodies. Nothing seems amiss at first sight because the world moves too quickly to really see. With all our advances in medicine and technology, we think there’s always a solution. But chronic illness has no answer. It is always lurking somewhere, even while in remission. It breathes with us, eats with us, sleeps with us, to the point where sometimes I think I have even grown attached to its detestable company, simply because it has become familiar. I notice when it is missing. Where could it be? Something is not right with the world. Is it coming back with company? Perhaps “awareness of our fragility” might not seem like the most important life lesson in the world, but it is the biggest realization for me. I want to write something positive and insightful in conclusion here, but there is nothing more to it. I would like to say that it forces me to examine my mortality such that I can live more purposefully, but in reality, I am just trying to get by like everyone else in this world. This article was originally published on A Chronic Voice. We want to hear your story. Become a Mighty contributor here . Lead photo by Thinkstock Images

A Chronic Voice

What to Remember on the Days Depression Leaves You Feeling Defeated

Before you begin, I encourage you to read this with an open mind, as these feelings are all part of the human experience. They will always exist no matter who or where you are. What I am trying to do is illustrate this humanity in every one of us. The type of depression and anxiety I experience is triggered by medications, and also lupus activity in the brain and nervous system. This is probably a pale comparison to those who struggle with mental illness as a primary disease. I wrote this especially with them in mind, and I hope to reach out to anyone sick or otherwise, who is feeling down or defeated today. Hang in there. I and many others are thinking of you, rooting for you and wishing you well. 1. Today is not a good day to make decisions. It is one of those dull days where food has lost all appeal, and I am unable to eat. In the process, it starves my mind of energy. Simple questions morph into complex equations that require colossal effort to answer. I should eat, but I don’t know what, and I don’t know if I can. I should work, but my mind is a blur as it keeps readjusting its focus. The fog in my brain is unsubstantial, and therefore, it is impossible to fight. I feel nothing. I feel weight. The weight of nothing bearing down on my chest, crushing against my lungs. Breathing requires conscious effort, as my body has forgotten its natural rhythm. I feel drowsy and with that, a little high. My body digs into its reserves and conjures pleasure for payment, for the delinquent pain that has overstayed its welcome. I feel drained of all emotion. Yet, I sob with grief. The cause is unknown. I feel numb yet anxious, a paradox reflecting the discord between mind and body. Anxiety has burrowed itself deep into my stomach, taunting me from within myself. I wish I could punch my gut to be rid of it. I lie in bed and stare at the wall. I sit on the sofa and stare at the floor. I do all the things that I have to do, tasks that other people expect of me. My own needs can wait, as the need to not deal is bigger than that. My thoughts are mush. I drag them in a net through a marsh. I wade for the sake of wading, breathe for the sake of breathing. To waste some time to arrive at nightfall. To sleep in hope of waking up to a better tomorrow. Sometimes, that’s all it takes. 2. Be kind to yourself. Today is not a good day to make decisions, and this is fine. No need to reprimand or correct yourself. It will not change anything. Save that energy to complete any necessary tasks for the day. You will need it. If there is no pressing matter at hand, then give yourself the day off to do absolutely nothing. It isn’t a crime. Don’t feel guilty about it. Be kind to yourself. Just cruise along without judgment, and release all the rules your ego has made up. “Don’t pity yourself.” F*ck that. “You should be doing something useful with your life.” F*ck that. “You shouldn’t be wasting your time.” F*ck that. F*ck should and shouldn’t. You have to just sit and let it be for today, or it will demand for more attention tomorrow, with more fire in its belly. 3. Hang in there and see it through. You don’t have to decide if you don’t want to. Let all thoughts and feelings sink and settle at the bottom. Get some sun, perhaps. It might help a little. You must remember that perhaps it was a wasted day, but that doesn’t mean it was a defeated life. You may lose a few battles, but you can still win this war. You can even fold your cards and give in to depression for a round or two, when it is obvious that playing a drawn out game with it will only end in bigger losses. As Eliezer Wiesel said, “There are victories of the soul and spirit. Sometimes, even if you lose, you win.” Hang in there and see it through. At the end of it all, you will understand why, but you mustn’t give up now. Not today, not tomorrow, not until time is ready for you. This post originally appeared on A Chronic Voice. We want to hear your story. Become a Mighty contributor here. Image via Thinkstock.

A Chronic Voice

What I Do to Take Care of My Illnesses Before Having Fun

So your friend with a chronic illness has rejected your party invitation… again. Or they’ve included a list of terms and conditions just in case they have to bail last minute. What’s up with that? Do they hate you or something? I booked a champagne brunch the other day for the boy’s birthday and thought, why not use it as a real life example to provide insight? Shall we go through the experience together? Physical and Mental Preparation I got lucky with this booking. It was only on one specific date, the prices were reasonable, and it had magnificent views on the 43rd floor! I was anticipating his happiness, which fueled my excitement. I checked the date again — perfect. It wasn’t around the “bad weeks” of my period, where extra inflammation occurs. I started to keep a close watch on my INR (to monitor my blood clotting) using my blood test machine, and adjusted my diet to maintain an optimal range. If I was going to consume alcohol, I had to make sure that my blood wasn’t too thin, and this does not change overnight. Sometimes I need to avoid leafy greens for awhile to normalize it (you heard me right). I made sure that I had enough exercise, especially the day before the brunch itself. That always seems to help take some stress off my body from alcohol consumption. I braced myself for one to two weeks of downtime and possible pain, as alcohol and inflammation go hand in hand. The Big Day And so the big day arrived. I pricked my finger and checked my INR again — all good. Of course if my blood had been too thin, I would have stayed clear of the alcohol. My boyfriend did not force me to drink; it was my decision to celebrate with him. I took a sip of champagne to judge its effects. It was delicious, but I started to feel dizzy and ill after only half a glass. So I slid it across the table to the birthday boy, and switched to red wine. I wondered where the inflammation would strike first; it is always a lucky draw. You have heard the word “inflammation” mentioned a few times by now. What does it mean in this instance? They usually appear as angry red swells that can clump up on any body part. I’ve had big lumps on my forehead before (who knew there were so many blood vessels between that flat patch of skin and skull?!). It struck like clockwork after two hours. The swollen wrist I had from the day before was now a bloated, unbendable chunk of meat. The muscles in my upper arms started to throb with aches, and I had mild vertigo. A sudden wave of nausea struck me when we stood up to leave. Descending 43 floors wasn’t much fun. Thank goodness there was no one else with us, as I looked unglamorous squatting in my dress. I had forewarned my boyfriend that we might have to hop into a cab straight home after, and this was exactly what happened. I passed out in bed the moment we got home, and this was just from 2.5 glasses of wine! I was experiencing nausea and swelling without any of the happy effects. That was a bit upsetting, especially after all my careful planning. If I am going to feel sick, at least let me have a bit of fun! Post Event I had ran through the possible scenarios in my head, but wasn’t prepared for the internal inflammation that occurred this time. It did cause me to panic a little, as my stomach felt bloated and swollen for days. I worried about internal bleeding, so I kept watch on all my vital signs and daily activities. I am not being paranoid, a chronic illness person doesn’t need much to sustain injury. I spent the following day in bed unwell, and utilized whatever energy I had to make a simple stew for dinner. It soothed the stomach to my relief, as that was a sign that there were no blockages from gut swelling. I recovered after a few slow days, which was a pleasant surprise. I had been prepared for up to two weeks of discomfort. What is the Point? You might have been muttering expletives while reading this piece. Or you might be judging me now for what I did. Why would I even do that, especially when I knew the possible consequences?! Well, I do it for the exact reasons anyone else does — to have a good time! And I do enjoy getting involved in the “normal world” once in a while. It is pretty hit or miss with me when it comes to alcohol, so I save these wildcards for special occasions with my favorite people. On the good days, I actually have a lot of fun, although the downtime is the same. You can imagine the level of exhaustion a “relaxing” Friday night out might bring. The pain and fatigue might even last throughout the whole of the next work week. Would I do it again? Of course! It’s fun and I get to bond with my friends in a different way. It just requires a lot of planning, and willingness to take some damage (not recommended during bouts of bad flares!). I have also decided long ago that keeping myself in a bubble isn’t exactly being alive either. Am I advocating for you to go wild and party hard? Of course not. All I wanted to do was use a single experience, to illustrate the amount of effort it can take for us to socialize. “Casual” barbecues have cost me just as much energy. What I am saying is – have some fun if you can, your way! To view the original post and more stories like this, visit: A Chronic Voice.