13 Things People Who Have Lupus Wish Others Understood

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Real people share their experiences living with lupus and what they wish others understood about the chronic illness.

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Why I Hope Talking About My Chronic Illness Unsettles You

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I understand not everyone is comfortable about talking about his or her life with chronic illness, but I am. And if I make you uncomfortable, I’ve achieved what I set out to do. That is my intent.

If something is close to your heart and you’ve got a voice, I believe you should be daring enough to use it. I’m aware that being completely open about a life with lupus is not everybody’s cup of tea, however, in my case it is — and I’ll have the whole teapot, thank you!

Chronic illness is still very new to me, but as it has become an inevitable and unchangeable part of my life, it’s something I’ve become incredibly passionate about. It has been hugely eye-opening to me that so many people live with invisible illnesses and that there is such a lack of awareness among the general population.

I admit that before being diagnosed I, too, had little knowledge about general chronic illness. However, being previously unaware only fuels my desire to promote awareness and alleviate the stigma that surrounds both lupus and chronic illness.

Every week, I put together at least two columns related to my life with lupus, and I’m passionate about this for a couple of reasons:

Writing is a form of self-expression and an outlet that continues to aid me in working through and understanding various parts of my new life with lupus.

I want to start a conversation. I’m writing in the hope that you read something, connect and resonate with it and share it with someone close who might not understand what you’re going through or have been through.

As I wrote in a column a couple of weeks ago, I got a tattoo of a wolf in large part to act as an ice-breaker for discussion. Even in the one month that I’ve had it, it’s done just that a half-dozen times.

The thing I notice most often about someone who’s asked about my ink? Their immediate look of discomfort and sympathy.

I don’t want the sympathy, but I’m not sorry they feel uncomfortable. I want them to feel unsettled while we discuss something that’s considered taboo. I need them to accept it and push past it.

Worldwide, many people live with a chronic illness in one form or another, but the stigma still remains.

Some would say I have a way with words, while others say that I just express myself well. My parents would suggest that I just talk way too much. But whichever it is, I have something to say to the world, and I’m going to share it — regardless if it’s ready to hear my truth or not.

The truth is life is hard, and although it’s not completely obvious, some of us live a life where the battle is not solely external.

I’m not going to spend my existence tiptoeing around the fact that a part of my life revolves around lupus. I’m aware my situation with lupus most likely would be considered fairly easy or “lucky,” yet I still face challenges every week.

My parents raised me to stand up and fight for what I believe in, to not accept the way things are and to be a part of the change I want to see on this planet. And I’m doing just that.

I have something to say, and whether society considers it socially acceptable or not, I want to share it with you.

I want you to help me and you won’t have to lift a finger. I’m asking you to help normalize something that millions of us don’t have any control over. I’m asking you for what every single person wants — to feel like we belong in this big, bad world.

I know it may make you uneasy, and I don’t mind if you’re at a loss for words, but I’m asking for a few minutes of your time to read my columns. I need you to listen to what I have to say.

This post originally appeared in Kristiana Page’s column “The Girl Who Cried Wolf” on Lupus News Today.

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Why My Life With Lupus Is About the Destination, Not the Journey

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I’ve read many inspirational posts and quotes that assert life is about the journey, not the destination. This is supposed to remind us all that life is short and to always accept and cherish the present for what it is.

I used to really connect with this mantra. However, after being diagnosed with lupus, I realized that some parts of my journey are incredibly difficult to cherish, and sometimes it’s not about celebrating the journey, but focusing on where it might lead — my destination.

I still try to find the great moments in every single day, but there are some moments when I just need to think about the bigger picture and where I’m heading.

As I look back over this year, there already are moments where I couldn’t bring myself to love and live in the moment, as so many people strive to do.

Life can be painful and stressful and altogether unfair. And it’s in these moments that I won’t be forcing myself to stop, look around and appreciate the sunshine, but rather to remember that I need to keep moving toward my destination.

I’m a striver, a fighter, a bit of a perfectionist and an overachiever. I’ve always believed we shouldn’t set our sights on the bare minimum, but aim high and, if possible, climb higher.

And I still believe this.

But living with chronic illness has taught me that not every day is about breaking records and pushing the limits. Some days are about moving forward that one inch — that is both a victory and an accomplishment.

Every day I wake up knowing that a part of my life is in the hands of something I have little to no control of, and some of these days aren’t good ones.

It’s always a good day when my renal doctor says my kidney function is improving and all my test results show I’m getting better with every visit.

But it’s a bad day when I start to notice that my hair — the one thing I got to hold on to when I felt like I had next to nothing else recognizable — is starting to thin and fall out and I don’t know why.

It’s not as easy as it once was to take these bad days because when I find something new is happening to my body, I can’t just brush it off. It’s not simply bad luck or coincidence. There’s a reason behind it and usually its name is lupus.

But on those days, my life doesn’t come to a standstill. I have to keep moving toward that elusive destination, and it doesn’t matter whether I make it an inch or a mile, as long as I continue pushing forward.

I still set goals and still aim as far as I can in every aspect of my life.

I will achieve everything I set out to in my lifetime — that won’t ever change.

But these days I know I need to set myself free of time limits because it’s not my pace that matters, but my persistence and determination.

This post originally appeared in Kristiana Page’s column “The Girl Who Cried Wolf” on Lupus News Today.

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When ‘I’m Tired’ Just Doesn’t Feel Like a Valid Excuse

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Every Thursday, I get up early — a feat in itself — and drive half an hour to meet my personal trainer for a 45-minute pain-and-sweat session. While I love these mornings, they come at a cost. If I’ve made plans with someone later in the day, it’s difficult to tell them the reason I won’t be able to make it is because I’m simply too tired.

For me, fatigue is not just expected, it’s normal.

I’m used to being tired, so much so that it’s no longer a destination, but a part of my journey that I’ve come to accept and learn to manage.

Every now and then I’m consumed by fatigue, and when it hits me no matter what I have planned, I know that it’s just been overshadowed by my need to rest and sleep.

Even though I’m very open about my lupus and everyone close to me is aware it makes me unusually tired, I feel incredibly uneasy telling someone the truth about why I need to cancel on them.

It’s terrible, but too often I find myself making up small, white lies about why I won’t be able to turn up at a lunch, dinner or party. But I can’t help it.

Regardless of the fact that it’s the absolute truth, “I’m tired” sounds like a poor excuse rather than a valid reason, and to anyone who lives without chronic illness, it probably sounds like a complete cop-out.

In the last half year, I’m ashamed to have to admit I haven’t turned up to many birthdays, sporting club events and dinners; I just couldn’t find the energy at the time.

And at just 21 years old, I’m incredibly embarrassed and disheartened, knowing that I’m missing out on so many memories and pastimes with my friends. I feel like I’m constantly having to choose: work or a birthday that night. Gym or lunch with friends. University or netball training. The choices are endless and entirely unfair.

There are not too many things that really get to me, but sometimes I feel as if I’d do anything just to have my energy back, even — and I know it’s terrible — make a deal with the devil if need be.

I’d give up many things not to have to constantly tell my friends, “I’m sorry I can’t, I’m just too exhausted,” or have to lie to them because that’s the reason I gave last week.

I wouldn’t mind if it meant I could never drink alcohol again if in exchange I could be full of life and bouncing with energy once again. I’d give it up in a heartbeat.

I’d never thought I’d say this, but in this area I truly just want to be your average twentysomething. I want to be able to go to work in the morning with the intention of heading out with my friends that night, knowing I’m going to make it.

I want to go to the gym and not get home so tired that I can’t even bear to hold my eyelids open.

I want to be able to plan a trip overseas and not worry about what the repercussions are going to be if I want to properly explore another culture. What I want is to feel young again.

While I’ve always been considered mature for my age, it wasn’t until now that I started to feel as if I was older, too.

Sometimes I feel as if I’m trapped — able-bodied, enthusiastic and raring to go, but with one major flaw: A faulty battery that can’t ever be fixed.

This post originally appeared in Kristiana Page’s column “The Girl Who Cried Wolf” on Lupus News Today.

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Why the Gym Makes Me Feel Powerful as a Person With Lupus

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After I was diagnosed with lupus, I felt like the weight of the world got lifted off me. But slowly, as I began to understand more and more, I started to feel something else. I felt heavy and hopeless with my new lack of possibilities in life. Over the last month or so, however, I’ve started to turn that on its head, thanks to one thing: the gym.

I’ve heard of many types of extraordinary feelings and have been lucky enough to experience some of them myself. I’ve felt tremendous courage as I faced my internal fears and conquered 10- to 12-foot waves while out surfing. I’ve turned to look at someone, knowing that in that moment I couldn’t love anyone or anything more and that I was whole-heartedly content. I have watched and felt beaming pride as my youngest sister used her new skills in sign language to communicate with a man with hearing loss, only to see his elation that someone could talk to him in his language.

The memories of these feelings, these moments, will stay with me for as long as I live. They, among others, touched me so close to my heart that they’re not just a minute in my history but a piece of who I am and will always be.

Last Thursday, as I worked through another personal training session, I realized why I continue to get myself up for these sweat-filled mornings. Besides the fact that I know I have someone waiting on me and it’ll do nothing but good for me, I realized there was one more reason I do it — and for me, it’s the most important reason there is.

When I go to the gym and run, push and pull and lift weights, I feel — for the first since being told about my lupus — that I am powerful.

It makes me feel strong. It makes me feel like I can truly do anything that I put my mind to. And it wasn’t until I noticed this that I realized just how much I needed to remember what that felt like.

I needed this moment. I needed this reality check, this moment of epiphany and intense feeling, to remember just how much I always have been, always am and always will be capable of achieving.

I used to feel like that so often, like I could create a goal and just work my way to achieving it no matter what it was, not backing down until I reached the outcome I wanted.

Only I stood in my way

And I know I can still do this — the only person who will ever stand in my way is me — but for a while there I guess I started to forget.

Over the past six months, I’ve read and read and read. They say that you can read too much, and I think in some ways maybe I did. Not only was I reading accounts of other lupus warriors, but I had started to accept their anecdotes as my own.

Deep down, I think a part of me was starting to become resigned to the fact that I was always going to be this tired, limited, perpetually lupus-affected person, and that this was just how it was going to be.

There is now a solid reason and a driving factor behind my going to the gym each week. It’s to push my boundaries and to always keep rediscovering and remembering what I’m capable of doing.

It’s to not just know that I’m strong and powerful. It’s to feel it and to prove to both myself and to my body that such a feeling belongs to me just as much as anyone else — and that this fact didn’t die with lupus.

I can’t call myself superhuman. No matter how good of a day I’m having, there is no way Clark Kent ever felt as tired as I always seem to.

But in those moments as I sit there, trying to catch my breath and push myself through the last four, three, two reps of an exercise, as my muscles are begging “why” and I know I’ll pay for it handsomely tomorrow morning, I feel “super-lupus.”

And I know that’s a ridiculous and laughable term, but I can’t explain it any other way.

It’s a simultaneous mix of feelings. I’m getting very used to being undeniably tired, yet somehow extremely powerful and proud in a way I’ve never known.

This post originally appeared in Kristiana Page’s column “The Girl Who Cried Wolf” on Lupus News Today.

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Realizing Lupus Might Affect My Dreams of Working a Full-Time Job

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Looking back at when I was 5 years old, I remember dreaming like most little kids do of a life planned out. I recall thinking I’d be married at around 30 years old just like my parents, have kids and have a full-time job.

I never really thought too hard about what my 20s would look like, but I expected those years to be what society depicts: a time to explore myself, grow as a person and make mistakes without much consequence.

I knew eventually I’d have to get my act together, get a stable job and be a proper adult, because that’s what you do in your late 20s and 30s. But I didn’t plan to worry about that until I was on the other side of 25.

This year, everything in my dream and everything I had ever planned went straight out the window — it became time to rethink and reanalyze everything my life would one day be.

I can still have most of what I want in life if I am prepared to redefine my expectations and work hard for it. But recently I’ve come to realize that even the possibility of holding down a full-time job will be a gargantuan battle, if it’s even feasible at all.

At the moment, I’m on heavy doses of immunosuppressant medication, but, while they aid me in making my lupus as dormant as possible, they’ll never take away all the side effects of living with chronic illness.

Nothing will ever save me from this perpetual trance of tiredness. Nothing will ever stop me from wearing down much faster than the average person. And never again will I know what it’s like to wake up in the morning feeling refreshed and ready to tackle whatever’s put in front of me without also feeling residual effects from previous days.

Right now I can only study part-time because I can’t keep up with the work and readings required at the university. The stress of full-time study is just too much for me to handle on top of everyday life and casual work.

At this point in time, I probably won’t finish my degree for another seven years. Even by the time I finish school there’s no guarantee I’ll be able to cope with a job in my chosen career path — assuming someone is willing to hire me.

When I think about this part of what my illness brings, it makes me scared and angry.

I’m scared because there is no certainty. I started this year with hopes of becoming a primary teacher. Changing my mind just before my diagnosis was fine because I still had all the options in the world open to me.

But when I was diagnosed it felt like all of my energy and this infinite range of opportunity was stolen from me.

I won’t have the option to work in a career that is overly physical because even though I’m fairly unaffected by lupus, my body can’t cope with being on my feet day after day. This severely limits options for future employment, and it makes me feel as if I’ve been cheated and forced into a box.

I’m angry because it took hard work to get where I am academically. I was and still am a good student, I have always put in a lot of effort throughout all my schooling and now, no matter how hard I study, how original my essay ideas are or how high I achieve, it might not matter.

I’ve never been afraid of facing adversity or confrontation, I don’t mind skipping the easy path and I am very aware that life is unfair to each and every one of us.

But for someone who has achieved pretty much everything I’ve wanted athletically and academically, it’s hard to accept that from now on if I want to realize my dream of having a normal, steady job, I won’t just have to work hard — I’ll have to fight myself and defy all odds for the rest of my life.

When I was little, I always assumed the toughest hurdle I would face would be the outside world. This year I learned that my greatest obstacle will never be out of reach because it lives within.

This post originally appeared in Kristiana Page’s column “The Girl Who Cried Wolf” on Lupus News Today.

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