Kristiana Page

@kristianapage | contributor
Australian writer, surfer, barista and university student studying an Arts/Science Degree in Philosophy/Mathematical Modelling. Deeply passionate about salt water in all forms, amazing coffee – even though she’s not allowed to drink it – and above all else traveling the world: one country at a time! Quirky by choice, inquisitive by nature and above all else: smiling, always!
Kristiana Page

Doctors Need to Acknowledge Patient Concerns

I don’t trust doctors easily. The team of specialists at my nephrology unit who have overseen my treatment for the past three years are the only medical professionals I have absolute faith in. I have confidence in them because when I attend an appointment to discuss my illness, test results and treatment, they don’t speak about me as if I’m not there. They talk with me. It’s a very small thing that’s so important to me. It’s easy for doctors to focus solely on my illness and forget there’s a living, breathing human attached to it. In some ways, I get it: Lupus is a complex disease. I ask questions they can’t answer. But as a patient, it hurts to feel as if I’m forgotten. I can feel lost in the hurricane of destruction and complications that is lupus. I’m often overshadowed by my chronic illness and the havoc it wreaks. When a doctor acknowledges my concerns and makes an effort to discuss things with me instead of talking at me, it makes all the difference in my experience. Too often, I visit a general practitioner and walk out feeling as if I haven’t been heard. I frequently leave the clinic feeling frustrated, knowing I’ll be back in a week with the same problem. I’m not asking for a doctor to take me at my word and assume that I’m right. All I want is to be allowed to explain my issues and express my concerns without being ignored or treated with condescension. I realize I don’t have medical training or experience with diagnosing diseases and prescribing medications. But I do have three years of living up close and personal with my chronic illness. And I think that ought to count for something. Truthfully, I hate attending doctor’s appointments. I’m tired of staring at clocks in the waiting room, wondering when I’ll finally be seen. I’m sick of raising concerns about specific antibiotics that have caused adverse side effects and being prescribed them anyway. I’m angry I pay an exorbitant amount for 10 minutes of a doctor’s time, only to have them dismiss what I have to say. Worst of all, the moment I walk out, I know I’ll have to return the following week. And I can only cross my fingers, hoping they’ll listen the next time around. A version of this story was originally published at Lupus News Today.

Kristiana Page

Falling In Love With Someone With Chronic Illness Isn't For Everyone

Love is a complicated subject when you’re chronically ill. If you’re chronically ill and looking for love, I’d like to share a harsh truth with you: Not everyone is going to have it in them to love you. That’s a hard pill to swallow but the sooner you realize it, the more realistic you can be about finding love. There are nearly 8 billion people in this world but not all of them have faced the same demons as you. Not all of them deal with tragedy and heartbreak in the same way you do. Being in a relationship with someone who has a chronic illness is like being involved with someone who has a moody, unpredictable, pessimistic, clingy twin — a twin that will be an inescapable part of your life. Loving me is not the hard part. The hard part is learning to love every part of me, including my chronic illness. I learned the hard way that most people don’t possess the qualities I need in a life partner. I need someone who is stronger, more patient and more understanding than the average person — someone who has it in them to weather storms they won’t see coming. Living life by my side isn’t easy — it never will be. I’m asking you to be OK with watching me fight hard battles by myself. At times, we’re both going to feel helpless. There’s no changing that. Ultimately, it comes down to two things: strength and resilience. Lupus is relentless, merciless and cruel. Not everybody has enough strength and resilience to live a life alongside lupus. It hurts that not everyone can handle the burden and suffering of an incurable, invisible illness. Heartbreak makes it seem personal. But the inability to cope in a relationship doesn’t make someone a bad person, it just means they’re not the right person. Everyone deserves someone to love. The needs of someone with a chronic illness are complex and specific, but that doesn’t mean they don’t deserve to be met. Lupus doesn’t mean there isn’t someone out there for you. It just means they are a special kind of someone. After all, you’re a special someone too. A version of this story was previously published on Lupus News Today.

Kristiana Page

Bottling Up My Struggle With Lupus to Protect Those Close to Me

When I’m in the depths of struggle, only the people closest to me know about it. I need to go through the hardship and come out on the other side before I’m comfortable writing about it or sharing it on social media. I need to prove to myself I can conquer it before I make it known that I was battling. Part of it is because I feel the need to keep up a strong front, both for myself and for everyone around me. I’m all about releasing emotional energy for the sake of my well-being and my mental health. But seeing my strength and spirit drop affects my loved ones almost as much as it affects me. I’ve learned that bottling every now and then — to protect my family — is not only beneficial, but also necessary to ease the burden of my chronic illness. My parents, sisters and partner are more than I could ever ask for and far more than I deserve. Burden is not a word that would come out of their mouths when referring to my lupus, but that doesn’t mean it doesn’t affect them. If you carry a rock with you every day, the fact that you don’t voice the harm it causes you doesn’t mean it’s not inflicting pain. Sometimes I keep a struggle to myself so its effect doesn’t ripple. It can be contained. It can stop with me. And sometimes it should. The other part is when people don’t understand how to feel, they do what they think is right. To people who don’t know me, my situation sounds sad. “It’s such a shame that someone so young has had such a burden heaped upon them.” Cue the tsunami of pity. I do not know how to deal with the pity. When I speak about my struggle with lupus, I’m not trying to sell you a sob story. And I don’t want you to feel sorry for me. What I want is for the world to understand the reality of a minority. The reality of a young, active, seemingly fit and healthy person who is plagued with health issues that the world never sees. I want to give people a different perspective. Living with lupus is like seeing life through a cracked lens. It doesn’t mean you can’t see through it anymore, and it doesn’t mean you throw it away. It just means you have to work around the crack. My 24/7 job is to make the life I want fit with the reality that has been thrust upon me. Sometimes it works. And sometimes no amount of squeezing, pushing and reshaping can make it happen. Struggle and hardship are companions of chronic illness. Because of lupus, I will face them for the rest of my life. They are the crack in a once-perfect lens. But what’s important is not the lens itself, it’s how you choose to see things. Follow this journey on The Girl Who Cried Wolf

Kristiana Page

Living a Life Worth Fighting For With a Chronic Illness

You would be surprised how many times I tell the story of my tumultuous diagnosis. Don’t misunderstand me: Lupus is a killer. If left undiagnosed, it can be a death sentence. But that couldn’t be further from my truth. My response is always the same, “I pulled up my socks, held my head high, forced a smile and went on with my life.” There were no other options. I decided early on that the only option was to fight back because there are endless things in my life that are worth fighting for. The “chronic” part of chronic illness means I will bear the burden of lupus for the rest of my life. I was handed a life sentence at 20 years old. It wasn’t fair. I didn’t deserve it. But unfortunately, life isn’t always fair. I could waste my life wondering why bad things happen to good people but it won’t bring my health back. And it won’t stop lupus from happening to someone else. I’ve met five other people under the age of 25 with a chronic illness like mine. None of them deserved the complications of invisible illness. But they’re all doing the same thing I am: Pushing the boundaries in every possible way, laughing in the face of adversity and reclaiming their lives from their chronic demons day after day. We all made the decision at one point or another that human existence, no matter how terrible the circumstances at times, is worth fighting for. If today is a bad day, as some days unfortunately are, I’m glad you’re reading this. It can be hard to remember why you started fighting. But I hope this serves as a reminder: You started fighting for a reason. Whether that reason was family, the love of your life, kids, ambition, yourself or something else entirely, you decided something in this universe was worth fighting for. So take the day. Take two. Take the week if you need to. But never let yourself forget why you started and why you need to keep going. Fight even if you don’t have the energy. Fight, especially when it brings you to tears. Fight for moments with your loved ones and for moments you’ll remember when the world goes quiet. Fight for yourself, fight for the person you could’ve been and fight for those who can’t. I hope you leave this world one day with a montage of all the times you said “Yes” when the answer could have been “No.” I hope you’re proud when you remember that when life dealt you some of the worst cards the deck had to offer, you played anyway. When the time comes for you to meet your maker, I hope you look back with happiness in your heart, knowing that every up and down, every moment of the battle, was worth fighting for. A version of this story was previously published at Lupus News Today.

Kristiana Page

How the Common Cold Can Affect Immunosuppressed People

There are two polar-opposite personalities within my body. There’s the energetic, “anything is possible, never back down and go-go-go” Kristi. Then there’s the lethargic, down-in-the-dumps version who can’t find the motivation to make herself lunch. I’m usually one or the other and rarely in between. But this past week and a half has been unusual. Without warning, I’ve found myself ping-ponging between my opposite sides. I started the week on a high. After using a prescribed medication to treat a sinus infection, my head felt lighter, my airways began to clear and I felt positive at the prospect of recovery. But as the week progressed, I’ve slowly been slipping into my unhappier version. Having a cold for two weeks or more is not an unusual occurrence for me. Sadly, I’m more surprised when I make it a few months without contracting a two-week-long viral illness. But this time it’s been one thing after another; I’m past the point of frustration and exhaustion. I can cope with having a cold. I can’t deal with the subsequent snowball effect. Taking immunosuppressive medication means that a cold which should have been a mere annoyance wiped me out as if it were the flu. Within a week that cold became a hacking sinus infection. And the icing on the cake? The antibiotics prescribed to rid me of the sinus infection produced an unbearable case of thrush. I could not seem to win. I only needed to attend university for one day last week. But I couldn’t go, because on a freezing, rainy day I had a case of thrush so bad that I couldn’t stand to put on a pair of pants. At my wits’ end, I dialed the number of an on-call nurse and bawled my little heart out. Living life with a chronic illness, I sometimes become desensitized to my situation. I’m haunted by a fear that I’m overdramatic, that my experience isn’t worth someone else’s time. But sometimes explaining how I feel to a lovely nurse over the phone and having her validate my concerns is exactly what I need. It took a call to a stranger for me to realize my feelings were valid and I wasn’t overreacting. That conversation allowed me to take a step back to remind myself that even if someone else didn’t validate my feelings, I am going through a lot and it’s OK to be overwhelmed. Some might even call it normal. Every six months I get stuck in a rut like this one. It starts with being coughed on and next thing I know, I’m three weeks’ deep in the trenches of fighting off multiple complications from the common cold. When it’s one thing after the other for weeks on end, it’s understandable that I falter. I have the necessary mental and emotional breakdowns, then pick up the scattered pieces of myself and keep charging on. Being strong is not about being an impenetrable wall of strength every moment of every day. Even concrete breaks when pounded continuously by a jackhammer. Strength is looking at a crappy situation and gathering everything within you to stand up one more time.

Kristiana Page

Keeping Relationships Strong When Chronic Illness Changes Someone

I’m a confessed hopeless romantic. Blame my parents! With 27 years of marriage under their belts and a grand total of 37 years together, I’ve spent my entire life watching a love story unfold. But just like any long-term relationship, their real-life fairy tale hasn’t always been smooth sailing. I’ve watched my parents stand by each other’s side to weather every storm, only to come out the other side stronger than ever. As I’ve gotten older, what I’ve grown to admire more than anything else about my parents’ relationship is their unwavering and steadfast commitment to making it work. They’ve been together for nearly four decades, so they haven’t shared life with just one person, but with the numerous evolutions of each other as they’ve changed over time. The ability to adapt and accept someone when they change is crucial to any relationship I’ll have, thanks to lupus. I need someone who is able to love me even when I’m not the same person they first met. I need someone who can look at me when I’m so heavily under the influence of prednisone that I can’t even recognize myself and say, “I know this isn’t who you are. I still see the girl I fell for and I love you.” My relationship with my partner Jordan is unique. The fact that we’re both battling chronic illnesses means that not once has he ever struggled to understand my point of view. He understands how illness and medications have the potential to bring out a side of me I don’t like or identify with. The person he met a year and a bit ago is not the person I am now. In this short span of time, I’ve become a little more weathered and a little wiser than the person I used to be. That morphing will be ongoing for the rest of my life. There will be countless times in my lifetime that I won’t be the bubbly, happy person he initially fell in love with. Sometimes lupus will drag me down with it and consume me whole. There’s nothing I can do about it except bite down hard, hold on tight and go along for the ride. There’s no manual for a relationship that involves lupus. When Jordan became a part of my life, he not only intertwined himself with me but my chronic illness as well. By starting a relationship together I was asking him to be ready to meet versions of me that were stronger, weaker and absolutely everything else in between. I was asking him to love the girl he knew and so many other variations of her he hadn’t met yet. Love isn’t easy at the best of times, and it’s certainly not easy throwing two chronic illnesses into the mix. However, if I’ve learned anything from watching my parents grow and evolve together over my 20 years, it’s that the best things aren’t easy. They are definitely worth fighting for!

Kristiana Page

Adjusting to Life With Lupus

Mid-conversation, I’m often asked questions that lead to me revealing information the other person isn’t ready to hear about. It involves an unsettling, controversial word. Actually, it’s not just a simple word, but a name: lupus. And then comes an all-important question I hear time and time again. What is lupus? That’s a great question! However, the answer depends on how much you want to know. The Mayo Clinic defines lupus as “a systemic autoimmune disease that occurs when your body’s immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs.” If you were to ask a doctor or nurse what the disease is, you would get a similar definition. That’s what lupus is from a medical lens, but a 38-word summary doesn’t do my disease justice. That’s not what lupus is to me. Lupus is an ever-evolving list of medications and pills, all with strange names thought up in a lab. It’s the prick of needles for blood tests and peeing into a tiny plastic container — sadly all-too-familiar routines. It’s the sound of Velcro ripping on and off as nurses check my blood pressure. It’s sitting in the musty waiting room of the old nephrology unit surrounded by people 40 years my senior staring at me while wondering why someone so young is in their company. Lupus is learning to accept that I have unresolvable rage. I’m not a fundamentally angry person, but there’s a part of me that probably will be forever furious about having lupus. I’ve long been accepting of the fact that I have it, and yet I can’t help begging the universe to tell me what exactly it I did wrong. I’m not usually one for wallowing in self-pity, but in dark moments I can’t help but ponder the question, “Why me?” Lupus is mentally beating myself when I can’t get out of bed, which only makes me more tired. It’s a vicious cycle! Lupus is having an overwhelming love for a body I also sometimes struggle not to hate. It’s remembering that while parts of me are self-destructive, the majority is doing absolutely everything it can to keep me alive. It’s feeling my pulse and experiencing tear-jerking gratitude for a heart with unfaltering allegiance to me. That little engine of mine has always kept fighting; she has always beat for me and only me. Lupus is getting ink put in my skin to remind me of exactly where I came from and where I’m heading. It’s getting up each morning to look at the tattoos on my body knowing they may speak of struggle, but they shout perseverance and victory. It’s seeing the Venus de Milo on my right arm and remembering that beauty is perception, self-love is a much-needed gift, and that I too am a beautiful creation. It’s admiring the detail in the wolf on the inside of my left bicep and remembering I have overcome this disease time and time again — today is not the day to back down. Lupus is the disease that has tried to ruin my life many a time. It’s the reason I get up every day, hands balled, fists up and ready to fight. Lupus is simultaneously the worst thing that’s ever happened to me and the reason I live my best life. Lupus is a battle I won’t ever win, but it’s still worth fighting. It’s waking up every day knowing that I already know what the most dangerous thing in my life will be. I carry it with me everywhere I go in life. What is lupus to you?

Community Voices

Going through chemo, what items would’ve made your experience slightly easier/more pleasant?

One of my sisters colleagues has unfortunately just been diagnosed with breast cancer, as it’s Christmas in place of doing a KK her workplace is putting together a hamper for her. What items would you recommend for someone going through treatment for the very first time?

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Kristiana Page

When You Ask People Living With Chronic Illness, 'What's Your Excuse?'

Living in this era of booming health and fitness, my Instagram and Facebook feeds are full of workout videos, fitspo selfies, and motivational posts. To me, physical exercise is just another form of medicine. When I spend money on exercise, I view it as an investment in my health for the future. However, there is a certain type of post that I struggle with, and they all end by posing the same question: “What’s your excuse?” I really struggle with reconciling my feelings toward this type of question because I’m regularly on both sides of the equation. I know what it feels like to be on the top of your game, full of energy, fit and healthy, loving life, and living it to the full. But I also know what it feels like when even the act of existing is outright exhausting. And this year, I’ve been in both states of being within a month of each other. The thing is that when I’m not feeling at my peak physical health, I don’t have an excuse — I have a reason. No one needs to tell me how much better and more accomplished I’d feel if I took off my sweats, got my butt off the couch, and got motivated — trust me, I already know! Sometimes it’s not just about finding the motivation; it’s about finding the energy even to start searching for that motivation. Unfortunately, I’m fresh out of that. Having spent the better part of a month in a hole of fatigue, I’ll be the first to tell you just how sick I am of sitting on the couch and taking naps. Hang on, that sounds fun to most people. What am I complaining about, right? Well, it’d be different if I’d taken up residence on the couch because I wanted to, but unfortunately, I’ve been here because I just don’t have the energy to be anywhere else. Asking someone who’s chronically ill “what their excuse is” implies laziness, and really, it’s anything but. Last Friday, I had three things on the to-do list for my post-work afternoon: read and annotate university readings, drop a résumé off for a potential job, and start a column. Of the three items on my list, only one of them got accomplished. Few people know what it’s like to have fatigue to the point where you can’t even motivate yourself to start three tasks. I’m not talking about finishing, but rather starting them at all. I’m not lazy, I am trying, but I’m also fatigued like you wouldn’t believe. It’s so easy to ask everyone else what their excuse is once you’ve already climbed the ladder of hardship and jumped all the hurdles. Do you know what it’s like to climb to the very top of the ladder only to fall off the highest rung? It’s not as easy as bouncing back from just a step or two lower, it’s starting all over again — not from the bottom rung, but from ground level. Right now, I don’t need criticism. I struggle enough with my fatigue, both physically and mentally. I need consistent and gentle encouragement and support. I need you to try to understand that my problem is not linear or easily managed. I need you to know that although it doesn’t look like it, underneath this sleepy exterior is someone who’s dying to be energetic and full of life again, but it’s going to be a long way back to the top. Not everyone has an excuse. Some of us have reasons — and darn good ones at that! Photo by Kinga Cichewicz on Unsplash

Kristiana Page

'Remission' Isn't Interchangeable With 'Cure'

The word “remission” doesn’t mean what most people think it does. When most people use the word remission, they do so in relation to cancer and assume that it’s easily interchangeable with “cure.” But it’s not — in fact, it’s far from it! Remission only refers to an absence of active disease; the illness isn’t gone, it’s just sleeping. The difference between remission with cancer and remission with a chronic illness like lupus is that there isn’t just a chance the disease will become active again one day, it will. It’s not just an educated guess; it’s a certainty. Don’t get me wrong, I want to be in remission more than anything. Twice a day, every day, I renew a commitment to achieving the end goal of remission. When I finally reach it, I’ll be overwhelmed like never before. Tears of happiness will flow out of me like a broken water fountain because never have I worked so long and so hard on something – never has anything been such a battle to be attained. It’ll be a rare moment, an experience that I’ve yet to see since before my day of diagnosis. It’ll be a moment that’s completely untouched by lupus, a moment that belongs to me — and only me! But the fact that I actively work toward remission every day, longing for that win, can’t change that there’s no way of knowing how long I’ll spend at this grand destination. It could be years, but it could also only be a matter of months. There’s anger inside of me, a fire I know will never be fully extinguished. There’s a part of me that’s so emotional about the idea of remission. I’m frustrated that I only have one option: to pin every single hope I have about my future health on something as unstable and uncertain as remission. I’m devastated that my body has been through hell, both internally and externally, and this is only the very beginning. I’m furious that I have to pump my body full of medication every single day, knowing that this is only the very first of who knows how many times I’ll have to do it. No words will ever express what it feels like to know that you’re 100 percent, completely incurable. The reality is that at only 22 years old, I’m already aware of my fate: the likelihood of curing lupus before it entirely consumes my body is at best slim to none. There’s no arrangement of words that will ever explain how devastating it is to be so young and almost certain of what your cause of death will be. Trust me, I understand how difficult that paragraph is to read — it’s all the more brutal knowing it’s not just the truth, but my personal truth. But I won’t apologize for how honest it is or how hard that might hit, because the world needs to understand just how serious chronic illness is. I’m a 20-something with a body deteriorating way before it’s time. My body will continue to attack itself intermittently for the rest of my life. If I’m lucky, I’ll get to keep my two lupus-riddled kidneys for a couple more decades, but I sure wouldn’t be betting on it. Remission is the only hope I have, but it’s far from being a solution. For someone with a chronic illness, it’s like the equivalent of just bandaging a broken ankle — it’ll help somewhat, but it’ll never fix the problem. Getty Image by Voyagerix