We received a lengthy, powerful letter recently from one of our readers, outlining her journey and suffering from a chronic invisible illness called Interstitial Cystitis, amongst other health challenges. Her name is Salisha Dookran. She was born in Trinidad and currently resides in Canada with her two (2) small children. This is her story. Interstitial Cystitis (IC), also known as Bladder Pain Syndrome (BPS), is a feeling of pain and pressure in the bladder area that also causes urinary urgency, frequency and lower urinary tract symptoms that last for more than six (6) weeks without an infection or cause. As September is Interstitial Cystitis Awareness Month, we have decided to share her letter below, with her permission. MY LIFE LIVING WITH CHRONIC INVISIBLE ILLNESSES & DISEASES Dear Editor, Ever wondered what is the difference between a person with an invisible disability and a person with a chronic invisible illness/disease? There is no difference - both suffer, just in different ways. "Just because you can’t see it, it doesn’t mean it’s not there. You can’t see depression, anxiety, or other mental illnesses physically, but that doesn’t mean they don’t exist." My motivation to share my chronic invisible illness/disease journey largely stems from my desire to help others feel less alone as they face criticism from others, who can’t see that they’re suffering. “Just because symptoms aren’t physically there when looking at a person struggling, does not mean they are not struggling internally; I wish people understood that there's more to a person than what you see physically.” An invisible chronic illness/disease is a term for any medical condition that isn’t easily visible to others. This includes chronic physical conditions such as ADHD, autism, hypothyroidism, hyperthyroidism, endometriosis, arthritis, asthma, diabetes, fibromyalgia, mental illnesses including interstitial cystitis, and others. These invisible illnesses have disease-specific symptoms, which may also bring invisible symptoms like pain, fatigue, and mood disorders such as depression and anxiety and may become a frequent part of your day. “The question is not how to get cured, but how to live.”― Joseph Conrad. Physical changes from an illness/disease may affect your appearance. These changes can turn a positive self-image into a poor one. Personal self-care such as getting a haircut, hair color, or even your nails done can turn into a once-in-a-blue-moon situation and, when you don't feel good about yourself, you tend to withdraw from friends and social activities. Living with an invisible chronic illness/disease often leads to judgment and criticism because others believe you look fine on the outside, and therefore you must be making up your symptoms. Unlike having an observable condition, those with invisible illnesses often face a lack of social awareness and additional stigma, as a result, these individuals often face more skepticism and are accused of being lazy or moody and in need of cheering up, going out more, calming down, or a host of other dismissive judgments. Trust me, I have lived it and continue to. Even Doctors can be dismissive and judgmental. Below is a photo depicting a normal bladder vs a bladder with Interstitial Cystitis. “Doctors don't believe anything unless you can prove it to them.”― Audrey Niffenegger. It's been thirteen (13) years since my initial diagnosis of Interstitial Cystitis along with Hunners ulcers, via a bladder biopsy which indicated over 100 bleeding ulcers throughout my bladder. Interstitial Cystitis (in-tur-STISH-ul sis-TIE-tis) is a chronic condition causing bladder pressure, bladder pain, and sometimes pelvic pain. The pain ranges from mild discomfort to severe pain. The condition is a part of a spectrum of diseases known as painful bladder syndrome. Interstitial Cystitis most often affects women and can have a long-lasting impact on their quality of life, including intimacy. Although there's no cure, medications and other therapies may offer relief. The pain of Interstitial Cystitis pain can be so severe that it's been rated equivalent to cancer pain. I have suffered from this awful excruciating pain and discomfort all of my childhood and adult life, most of which was spent visiting one specialist after the other, having multiple tests (x-rays, etc) done, being rushed to the Hospital due to excruciating pain, being hospitalized for weeks on end, and countless IV and surgeries. I was just fourteen (14) years of age when Doctors thought the pain stemmed from a supposedly chronic appendicitis, and before I knew it I was having my appendix removed. I also suffered, and still do, from chronic urinary tract infections that do not seem to go away even with the use of antibiotics. This often leads to kidney infections and other health issues. “I have continued to get sicker in part because I refuse to rest as much as I should, because I am optimistic and because I push myself.”― Whitney Dafoe. There were many times I reached the point of wanting to surrender, by putting an end to this pain, because oftentimes I feel depressed and defeated. I question myself every day as to how do I manage to get through my day, enduring this horrendous excruciating pain, and my only answer is that God is with me. When you cannot make plans ahead of time and you have to live your life day-to-day, based on how you’re feeling, when you have to constantly explain when your moods change or why you cannot eat or drink certain things, that you no longer want to go anywhere or that you want to leave an outing abruptly and just go home, when you don’t want to even say that you’re in pain to spoil plans or ruin anyone else’s fun, it becomes exhausting and frustrating - physically, mentally and emotionally. On a good day, and by a good day, I mean when my pain is manageable, I push myself by trying to get all and everything I could get done that I wasn’t able to do the day or week before, with countless rest in between, but then I end up right back to being in pain that could last days, weeks or even months. Have I tried natural supplements? Of course, I have - even before my initial diagnosis, and nothing helped. I have also recently tried supplements that other interstitial cystitis sufferers have tried, such as Aloe Vera gel capsules, D-mannose capsules, Slippery Elm capsules, marshmallow root capsules, Magnesium capsules, along with prescription antibiotics and pain medications such as Elmiron, Tramadol, Amitriptyline, Morphine, Hydroxyzine, Myrbetriq, Hydroxyzine, Ketolorac, Oxycodone - but nothing relieves the pain. “That is what chronic illness is . . . a disconnect between what our souls can do and what our bodies can do.”― Barbara Lieberman. Some prescription medication side effects made my vision blurred to the point where I could not see properly, even now I still experience blurred vision occasionally. Some made me nauseous to the point where I was throwing up every day. I had heart palpitations, allergic reactions and some even triggered my migraines and caused withdrawal symptoms from long-term use. So, while it may be good for one thing it can cause other issues. I even did pelvic floor physiotherapy and acupuncture therapy. I've also had several surgeries with instillations done directly into the bladder which only gave a minimum of two (2) weeks of relief. The last six (6) bladder instillations I did, sent my bladder into a mad rage, full-on flare after every instillation. By the time I got home, I was in crippling pain and discomfort. Countless cystoscopies – a rather uncomfortable medical procedure where a thin tube with a camera at the tip is inserted through the urethra to examine the bladder…Oh! and before I forget to mention, during my second pregnancy, I decided to have a C-section done to avoid added strain and pressure on my bladder and pelvic floor and also to avoid putting my baby under any stress - but guess what, the surgeon accidentally cut into my bladder that sent me into a major flare-up til today, which made it impossible for me to care for my newly born daughter the way I should have. “Chronic illness is hard. Pain is hard. Isolation is hard. The financial cost is hard. Grieving is hard and necessary and sometimes takes far longer than we ever imagined.”― Cindee Snider. To complicate matters, like many chronic illness conditions, Interstitial Cystitis pain tends to come in waves and flow in severity. There’s not only pain but discomfort from a constant burning sensation in the urethra, and lower abdominal pain when voiding. Some days, the pain can be manageable, allowing me to do what might be considered an easy task for others - such as taking a shower, cooking a meal, or simply taking a walk - and other days it’s very difficult to work, socialize, and function, confusing those who can’t “see” why one day is good and another a challenge. Even breathing seems like a task. It is not just the physical pain, but the mental and emotional part that comes with it. While the world is asleep, many of my nights are spent with tears in my eyes and, my fist clenched under the sheets. These sleepless nights, tossing and turning, my body being mangled into a ball due to excruciating pain. The countless trips to the bathroom seem like a never-ending roller coaster. Then morning comes - it’s a warm, sunshiny day, but in my bed is where I want to stay. When I can’t bury my head in a pillow and scream, I find a washroom or private space where I can be alone and bawl my eyes out - then put on my brave face and carry on with the day. Having multiple chronic invisible illnesses/diseases is frustrating as you are often exhausted, tired and even if you do get some sleep, you’re just as tired as if you didn’t. “Please be patient with me. Sometimes when I’m quiet, it’s because I need to figure myself out. It’s not because I don’t want to talk. Sometimes there are no words for my thoughts.”― Kamla Bolaños. The problem is that when I share that I am suffering from pain in my bladder/kidneys, etc, people will often respond with, "But you were fine a few minutes ago," or "you were fine yesterday," not realizing that my pain can fluctuate. Some even try telling me I should drink cranberry juice - that it's "good for urinary tract infections," but little do they know, while it's good for UTIs, having Interstitial Cystitis and drinking cranberry juice amongst many other drinks and food, you’re actually adding fuel to the fire. Even stress is a trigger which can send you in a flare for days, weeks, or even months, especially when you have Interstitial Cystitis with Hunners ulcers. While this makes explaining an invisible illness to others difficult, it’s often necessary to gain needed accommodations at work or home, proper medical care, support, and understanding. It can often feel difficult to know when to disclose specific information about your personal life, particularly experiences that may feel raw or painful to talk about. Due to the severity of the pain and discomfort that I experience, I often become irritated and moody, snapping at my loved ones for no apparent reason. I am tired of being sick and tired. Passing urine is like peeing acid - it burns, it hurts and is usually bloody when those hundreds of ulcers act up. I would like to hope that they [my loved ones] do understand that this miserable, moody and irritated person is not who I am or who I want to be, but being in constant excruciating pain regardless of how manageable it is, that pain is there. During my waking and sleeping moments. it's there, when I laugh, it's there, when I’m smiling, it's there - it never goes away. “As with many life-altering events, an autoimmune illness is almost guaranteed to cause you to re-evaluate your priorities.”― Joan Friedlander. I would like to think that my kids understand why their mommy can’t always play or do fun things with them. It kills me when my 8-year-old son tells me he knows I am in pain and he wishes I was not sick all the time so I can play with him and his sister. I hope that they understand my sacrifices, regardless of how small it may seem to them, that it's something huge on my part. They see me in pain, they dry my tears, through it all they constantly remind me of how much they love me and I remind myself of how blessed I am to have them. They are what keeps me going, they are my reason for fighting because they need me as much as I need them. My son who is just eight (8) years old was diagnosed with ADHD just over a year ago, and I see him struggling. I watch him fall sick from being on medication. I see him with his emotions all over the place, not being able to explain what’s going on and how he is feeling and though I can relate, I feel helpless at times. One thing I do know is that I will always make sure to remind him that he is never alone and regardless of what others may think of him, he is my superstar. I hope and pray that he never has to endure the stigma that comes with having an invisible illness. On the most basic level, a shortcut to help others get it right away, is to compare your invisible illness pain to a visible physical ailment and realize the challenges those disabilities present. “I fight for my health every day in ways that most people don’t understand. I’m not lazy. I’m a warrior!”– Unknown. Everyone understands why a person in a wheelchair can’t swim, climb the stairs or reach the top of a shelf and no one expects him/her to, but with an invisible illness, there are many things we can’t do and yet society always expects us to do them anyway. I can’t swim, climb the stairs nor can I reach the top of a shelf, but people don’t see it so they don’t get it. When you have an acute illness such as bronchitis or the flu, you know you’ll feel better and be back to normal within a short period. This isn’t true with a chronic illness. It may never go away and can disrupt your life in many ways. You would not tell someone with an earache, toothache, or even the flu to fix it themselves - you would tell them to go to the Doctor, take meds, rest, and so on. It should be similar to invisible illnesses. One should not assume people should fix these illnesses on their own. The same way you cannot see gravity, but we are all subject to it, invisible illnesses/diseases are just as real as gravity. I have days when I am mangled in pain, rolling around on the floor. Days when I am throwing up at least five (5) times a day because the pain is so intense, peeing blood, having chills, pains in my kidneys, and entire body. Some nights I’m so exhausted from having frequency and urgency that I just want to sleep on the washroom floor. There are days my tummy is so bloated that I look as though I am five (5) months pregnant - but not everyone has seen this side of my life. “There must be those among whom we can sit down and weep and still be counted as warriors.”― Adrienne Rich. Imagine going to the ER crying in pain and being asked by the Doctor, “what do you expect us to do for you?” My response, if I wasn't in excruciating pain, would be, “Holy f---, you’re supposed to be the expert - isn’t that’s why you became a Doctor?” I have also had Doctors dismiss me because they do not know how to treat my bladder disease. And in case you’re wondering just how bad the pain can be, let me describe to you how this pain feels for me. Inside my bladder feels as though it is being cut with razor blades, broken glass and stabbed with hot forks -then drenched in lemon juice, vinegar, alcohol, hot peppers, and salt, and then tossed on an open fire. Simply put, it would be like pouring acid on an open wound and when you void it, it's like peeing acid that’s bloody. Many of you won’t know this, but over a decade ago, I owned a Skincare Spa. Despite my illness, having my independence meant a lot to me, and I was not about to let some damn illness rule me. There were days I would be so exhausted from being up all night in pain and groggy from pain medications, that I would nap in between appointments. Some days I would go to work with a catheter instilled, just not to disappoint a client. I would wake up, makeup and show up. My Spa was like my haven. I was the boss, no one to answer to or come down on me for reaching to work late or taking a trillion bathroom breaks. I was in control of how much I was able to push myself, depending on how I felt. “I often wished that more people understood the invisible side of things. Even the people who seemed to understand, didn't really.”― Jennifer Starzec. When I was not working, most of my time was spent resting at home, researching online, and many weeks in the Hospital. To date, I still have not found a Doctor or treatment that works for me. Just like with everything else, what works for others may not work for me. So far, everything has been trial-and-error. The earliest published record of Interstitial Cystitis appeared in an 1836 textbook by the Philadelphia Surgeon, Joseph Parrish, who documented a syndrome of chronic frequency, urgency, dysuria, and pelvic pain which he called "tic doloureux of the bladder." Tic doloureux was a contemporaneous diagnosis used to describe painful, idiopathic disorders of nerves. 185 years ago and still to date, there is no known cause or cure. Apart from Interstitial Cystitis, I also have hypothyroidism, acute renal colic and acute nephritis. Renal colic is pain that occurs due to a stone in the urinary tract. The urinary tract includes the kidneys, ureters, urinary bladder, and urethra. Acute nephritis occurs when your kidneys suddenly become inflamed. Acute nephritis has several causes, and it can ultimately lead to kidney failure if it's left untreated. This condition used to be known as Bright's disease. Hypothyroidism is a serious chronic illness (underactive thyroid) and is a condition in which your thyroid gland doesn't produce enough of certain crucial hormones. Hypothyroidism may not cause noticeable symptoms in the early stages. It must be treated with medication every day for life and if left untreated, hypothyroidism can cause several health problems, such as obesity, joint pain, infertility, and heart disease. “Miraculously recover or die. That's the extent of our cultural bandwidth for chronic illness.”― S. Kelley Harrell. Signs and symptoms of hypothyroidism are fatigue, increased sensitivity to cold, constipation, dry skin, weight gain, puffy face, hoarseness, muscle weakness, elevated blood cholesterol level, muscle aches, tenderness and stiffness, pain and stiffness or swelling in your joints, heavier than normal or irregular menstrual periods, thinning hair, slowed heart rate, depression, impaired memory (brain fog) and enlarged thyroid gland (goiter). So if I haven’t done much or anything at all and I am tired or my body aches, I complain that I am feeling cold when the temperature outdoors is 30+ degrees Celcius, or I can’t remember what we just spoke about or I zone out during a conversation - don’t think that you are being ignored, or that I am just unfit and lazy or that I am crazy. While many take the little things for granted, like being able to jump out of bed on a morning and go for a run, walk or jog, maybe even a swim, these are the things we long to do if it weren’t for our chronic invisible illness/disease. If you have good health, live life, enjoy every second that you can live a life, free of pain, because what you take for granted is what we pray that we can do on our one good day. Living with a combination of chronic illnesses has taken a toll on me in every aspect of my life - friendship, relationship, social life, and career, but not many can understand unless they are enduring the same faith. There are many things I long to do, many things I wish to eat, many places I would like to go but when you have to live a life based on how you feel daily, when you have to limit yourself because taking a swim in a pool or beach, and long drives which include having to pack medications, extra clothes in case of accidents, pads, catheters, adult diapers, cushions, heating pads, restroom access card, and not forgetting locating washrooms along the way - it becomes cumbersome. Of course, I have pride and don’t take half these things with me as I don’t want to seem like a walking Pharmacy/Hospital. I just try to ride it out and bear it as much as I can. Drinking something as simple as bottled water, that does not agree with your bladder, or having to check the ingredients of mostly everything before consumption, or having to stop at every fast food outlet to void - is very frustrating, to say the least. I often wonder what a life without these chronic invisible illnesses/diseases would be like for me. Maybe I would go skiing or challenge myself to a hike, probably ride a horse or a bike or go swimming in the ocean like a fish - so free, just wanting to just be me. I would travel the world, see places, do the things I love to do, accomplish all my goals and dreams - not letting a precious minute go to waste. But like a thief, it sneaks up, waiting to steal everything that life has given me, robbing me of my joy and happiness - robbing me of my life. I have had people in my life who I trusted that only pretended to care, then being told that "the world does not revolve around me" or that one cannot live their life based on my illness or make compromises just because I am not well - for instance, if I can't go to the beach or go partying at the club. I have had to endure mental and emotional abuse due to the nature of my health because my body won’t allow me to live a normal life. Two (2) failed marriages all because they did not sign up to have to deal with my chronic invisible illness/disease - but I can assure you if they or anyone who doubts my pain had to endure just fifteen (15) minutes of this pain, not even for an entire day - in just fifteen (15) minutes or less they would crave death. “I had learned quickly that life doesn't always go the way I want it to, and that's okay. I still plod on.”― Sarah Todd Hammer. I have been told that God is punishing me with an illness/disease that has no cure. I was even threatened by my ex, saying he will use my health against me to have my kids taken away from me - claiming that I am unfit to care for them, when in truth, regardless of how much pain I am in, I make sure that they are properly well-taken care of, whether it is by me or with help. In my desperation to find some sort of help and relief, I encountered two (2) unfortunate circumstances. The first one was while I was living in Trinidad. Whilst at my job, I met a man who was dressed as a Doctor in a white coat, stethoscope, medical badge, etc. I was attending to him and during our conversation I asked him if he knew of any Doctors that would be able to help find out what was wrong with me. This was ten (10) years before my initial diagnosis of Interstitial Cystitis in 2008. He said he would be able to help me and that he can get me medication that would ease my pain. I paid him all of my salary and even took an advance in pay just so I could afford to pay for the medications he was getting for me from the “Hospital.” This went on for months until I bumped into a friend and was telling him about the Doctor and the medications I was taking. Coincidently, he also knew the Doctor and told me he was being treated by him for his asthma. When we showed each other the meds we were both given by this man, it was the same thing - me for my bladder and him for his asthma and a lot of things were not adding up. That is when the Fraud Squad got involved. It turned out he had been conning a lot of desperate people in search of medical help and he was eventually arrested. The second incident took place back in 2017 when I received a private message on my social media account in relation to things that I posted, and was told they knew of a Doctor that has successfully treated IC patients and cured them. Again, in my desperation, I sent over US $700 to this “Doctor” that would create a specific medication for me for my IC, using all natural ingredients. When it was time to have my medication sent to me, I was told that it was withheld by Customs and I needed to pay more money to have it cleared. I refused to believe that this would happen to me a second time, but unfortunately, it did. Lesson learnt and please don’t judge me until you are in my shoes - only then you will understand my desperation for some sort of help, relief, etc. All of this has caused me to shut people out, even the ones who genuinely care. Throughout my life experiences I have learned to keep everything to myself, pretending that all was and is fine, so therefore opening up here [in this letter] and sharing this part of my life is a big deal for me. I am not looking for attention or sympathy. I am simply sharing my journey as an invisible chronic illness warrior, in hopes that people can become more understanding, supportive and less judgmental. No one likes to feel sick or feel any type of pain. Why would someone make up feeling sick or being in pain 24/7? People label us as being lazy with no ambition, they think we are comfortable living life on handouts just because we don’t work and we aren’t allowed to feel tired and exhausted, not just physically but mentally and emotionally. Many times they tell us we should do their job and then we’ll understand what being tired and exhausted is. However, little do they know we would trade lives in a heartbeat as long as they are willing to live our lives mangled in pain, vomiting, living off of medications that do nothing but harm our bodies more, creating more unwanted health issues. For f--- sake, who would want to live their life in constant agony?? NO ONE! No one wants to have a friend, or a partner for that matter, who they can’t rely on, who can’t bring an income to the table or hang out with because they're constantly in pain or that they can’t have an impromptu outing with. No employer wants an employee who is constantly late for work or absent from work due to being sick and in pain all the time, and who takes a million bathroom breaks. To the people who think that we embrace and rejoice at not having to work or that we are lazy because we can’t do things that normal people can do, you all can just f--- off. We are already suffering, we don’t need to be walking on eggshells, we don’t need the stares, the whispers, we don’t need to be reminded or feel ashamed and embarrassed that our exhaustion is what you perceive it to be from doing nothing all day, when compared to your exhaustion from working all day. Just like everyone else, we have dreams, we have goals but we are limited. Instead of being the hand that pushes us over the edge that we are already struggling and grasping to hold on to, be the hand that pulls us up. When people judge us, it hurts. If words could cut, I would have bled to death ages ago. A little compassion can go a long way, and so can harsh words. Don’t alienate us more than we already feel. Truth is, when people judge me and compare me to others, it breaks me. It takes me to dark places. I feel as though I can just close my eyes and drift away to a place where there is no more pain, no more suffering, no more judgment. “As a disabled person, I resent the idea that we, in all forms and severities, should be punished for what is out of our control.”― Keah Brown. Chronic invisible illness/disease sufferers tend to push people away. I know because I am guilty of this. It is a lot easier if someone pulls away from me and wants nothing to do with me, than me having to cancel or ruin plans, or having to explain a million reasons why I don’t feel well - than to have them see the physical, mental and emotional effect it has on me. It hurts a little less when I push people away, rather than them giving up on me and walking away and if I had to choose between being alone for the rest of my life and feeling like a burden or inconvenience to someone, I would choose being alone because the people around us end up suffering too. Those who genuinely care, try their hardest to understand our situation, and they feel helpless when they don’t know how to comfort us. There is nothing I would not do to see the people I love and care about, happy, so I give more of myself even when I think I have nothing left to offer. Despite my many challenges and struggles, I still try to be the best version of myself, the way I know how. I try to lend a listening ear and help those in need. I am grateful that God chose me to fight this battle because not many of us can survive the wrath of chronic invisible illnesses/diseases. Every day is a struggle, trying to get through one minute at a time, and though the pain is excruciating - pain tells me that I can feel and that I am still alive. “It got worse still as time went on because people did not sympathize with you anymore. They couldn't do enough for you at first, and that helped, and then they got bored with your troubles. But your troubles went on just the same and you had to bear them alone.”― Elizabeth Goudge. I have lost many people that meant a lot to me through suicide because of chronic invisible illnesses/diseases, such as mental illness and also from Interstitial Cystitis. Millions suffer and very few understand. Let us not be so quick to judge because what might seem meaningless to you because you don’t understand someone’s suffering, can make a difference between life and death to the person suffering. If everyone around us gives up on us, we would eventually give up on ourselves. We are alive, but we aren’t truly living when all these chronic invisible illnesses/diseases insist on, is taking and taking. We cry, scream, beg and plead. We just want to be heard - our pain is real, it is not in our head. When you look at us, what do you see?? A face with a smile or makeup well done. We talk, we laugh, we smile, we try to have fun, but beneath the surface and behind the laughter and smiles is a pain we so beautifully and courageously disguise. You can’t feel what we feel or say that it's not real. Not because you can’t see our illnesses/diseases, it doesn’t mean that it's not there. The same way we all have blood flowing through our veins, which we also cannot see. “Nothing is more beautiful than a real smile that has struggled through tears.”― Unknown Pictured Above: Liza Stirneman (Left), Luke Farrell (Center) and Amburlyn Sheerwood (Right). This is Liza, Luke and Amburlyn, my IC Family among many others. We met through an online support group for Interstitial Cystitis. I thank God for them because we are all suffering from chronic invisible illnesses/diseases and we understand each other’s sufferings. “Those of us with chronic pain have something unique to offer, not in spite of our pain, but because of it. It's okay to grieve the losses of chronic illness. It's okay to be broken; everyone is in some way."― Unknown If you could see our pain, what do you think it would look like? Here is a painting that is just the tip of the iceberg of what we really feel. The image above was painted by Ashley Wright, who also endures excruciating pain associated with Interstitial Cystitis. She calls this piece "See Through Me." She was trying to paint a vision of what it would be like if you could see the pain we go through. My chronic invisible illnesses/disease pains are real and as sure as the sun rises on a morning and sets at night, as sure as the moon that shines and brightens the night, so is this excruciating, debilitating pain. Sometimes we need someone to simply be there, not to fix anything or do anything in particular, but just to let us feel supported and cared about. I don’t want my pain and struggle to make me a victim. I want my battle to make me someone else’s hero. So next time someone tells you that they are struggling with an illness, please listen. Even if they look fine. Even if you would rather talk about something else. Don’t condescend, don’t ignore, and please don’t disappear. You may feel certain that if they just got out of the house more, or “stopped dwelling on it,” or tried this great holistic diet, that all their problems would magically disappear. But no matter how certain you are, and no matter how well-intentioned, you have no idea what’s going on inside of another person’s body. But that person knows. And if you truly love them, you can start by trusting them. “I started feeling afraid of my own body, like it was a torture chamber I’d been trapped inside.”― Talia Hibbert. From the bottom of my heart I would like to thank my parents who made countless Hospital trips to the Emergency Room with me since I was a kid, to those who have stood by me and have comforted me through some very trying times, who during my long Hospital stays would call, text and even visit, making sure that I was okay and who still do. To Nanda Mohammed, who during my withdrawal symptoms from long use of pain medications, would try to keep me calm, when I was literally going crazy - feeling things crawling on my head and body, who stayed with me most nights, making sure that I was comfortable and able to fall asleep. I could never thank you enough for not abandoning me when the person closest to me couldn’t see or try to understand what I was going through. To my IC online support system, thank you all very much for allowing me to vent when I need to without judgement, to the Editor of this article for publishing my story and last but not least, to my support system at home - thank you all for putting up with my moods, for understanding when I simply just need to stay in bed, for drying my tears when they just wouldn’t stop falling, for holding my hair and rubbing my back when I am vomiting, for trying to cheer me up and ensuring that I am comfortable in every way possible and for taking care of everything when I cannot. Thank you ALL. Thank you for taking the time to read about my chronic invisible illnesses/diseases and I hope that you and others gained some knowledge and a better understanding of the journey someone living an invisible illness/disease or invisible disability have to endure daily. I recommend your readers check out the link below for more information: https://www.chatelaine.com/health/what-it-feels-like-to-live-with-an-incurable-bladder-disease/ Watch the tragic video below about a mother's struggle in the aftermath of her daughter's death by suicide. Her daughter could no longer bear the pain from her Interstitial Cystitis. To all my invisible chronic illness/disease warriors, remember when the unthinkable happens, the lighthouse is hope. Once we choose hope, everything is possible and if opening your eyes, or getting out of bed, or holding a spoon, or combing your hair is the daunting Mount Everest you climb today, that is okay.
Written by Salisha Dookran, An Invisible Chronic Illness/Disease Warrior. “Often the pain that makes us feel most stuck is not our suffering; it is experiencing distress in the presence of people who expect us to get better faster than we can.”― K.J. Ramsey. We are a small operation. If you've found our articles to be informative, please consider supporting us via PayPal or buying us a coffee. Your contribution is incredibly appreciated and goes a long way. Simply sharing our articles also helps us. Sign up for our free WhatsApp Alerts to be notified as soon as we post breaking news. NEW! Check out our Merchandise Store for high-quality t-shirts, hats and more!
1 Comment
Gangaram madho
11/12/2023 01:06:43 pm
After reading this article..I clearly understand what is chronic illness disease ..an for someone who living with this on a daily basis is really a true warrior to survive in this storm.thanks for sharing this article an I hope people can understand an gain some knowledge of what a chronic illness is .thanks very much.
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