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10 Things to Tell Your Friends About Lupus

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High school is a lot to deal with. Throw lupus in the mix and it gets a whole lot harder. On top of balancing classes and maintaining your social life, you also have to put up with symptoms like fatigue and joint pain.

And oh, yeah, somehow you have to explain lupus to your friends. Should be easy, right? It’s just a disease with no clear cause or cure that is different for everyone and which many people have never heard of.

OK, maybe not so easy.

Unless your friends know somebody else who’s living with lupus, chances are they won’t get it right away. But don’t worry, they’ll catch on. Just fight the urge to roll your eyes and be ready to tell them these 10 things —sooner or later it will sink in.

1. It’s not contagious, relax.

You can’t “catch” lupus like a virus. So yes, you can still hug me. And you can still share my water bottle — you might catch my cold but you won’t catch my lupus. No one is quite sure how you get lupus, but scientists think it’s a combination of hormones, genetics, and environmental causes.

2. I might be on the same medications as people with cancer or malaria… but I don’t have cancer or malaria.

Yeah, it’s confusing. But some of the drugs that work well for other illnesses help with lupus too. Some medications used in chemotherapy for cancer patients also help control the immune system in people with lupus. Medications used to treat malaria can also treat skin rashes, joint pain and sun sensitivity from lupus.

3. Yes, it affects my immune system. But it’s not like HIV/AIDS.

Actually, it’s kind of the opposite. People with HIV/AIDS have low immune activity so they’re unable to fight off infections, but people with lupus have a highly active immune system that attacks the body. And while HIV/AIDS is sexually transmitted, lupus isn’t.

4. It’s more common than you think.

You might think lupus is a super rare disease, but about 1.5 million people in the US have it. Selena Gomez has lupus. So does Nick Cannon. Seal has it, too. It’s tricky to diagnose, so there may be a lot more people with lupus who haven’t been diagnosed yet.

5. Guys can get it, too.

Lupus is definitely most common in young and middle-aged women (90 percent of people diagnosed with the disease are women ages 15-44), but anyone of any age can have lupus — guys included.

6. No, I’m not lazy.

You’ll probably notice me napping more than the average person. It’s not that I just really like to snooze — I need to. Chronic fatigue is a big part of lupus. If I don’t sit down or take a nap when I get tired, I could have a flare and start feeling really sick. It’s important for me to recharge so I have energy to do more later.

7. I’m glad to hear I look fine, but that doesn’t mean I feel fine.

It’s flattering that you don’t think I “look sick”… to a point. But trust me, when I say I don’t feel well, I mean it. Sometimes it may be more obvious that my lupus is acting up, like if I have a rash on my skin. But even if I look like myself, I might be experiencing joint pain, fatigue, or other problems you can’t see. Lupus is invisible that way, but it’s very real.

8. I’m not avoiding you, seriously.

I’m sorry I missed your party last week. But I promise I’m not being flaky. When I say it’s because I’m not feeling well, that really is the reason.

9. I really, really can’t go tanning.

In fact, I need to wear sunscreen all the time. Even when it’s not sunny. And even when I’m not outside. I know it sounds like I’m overreacting, but my lupus makes me sensitive to the ultraviolet rays in sunlight and even indoor lighting. It can give me a rash and make me feel fatigued. So I’ll stick with my floppy sunhat and SPF 100, thank you very much.

10. “No cure” doesn’t mean I can’t still live a regular life.

Lupus sucks. It’s a serious disease, and it can be deadly. But luckily there are a lot of medications to treat its symptoms and prevent flares. I need to work with my doctors to keep my health under control and listen to my body when I don’t feel well. But I can still concentrate on my goals and have fun like everyone else. Lupus is just one part of my life.

This blog was originally published on Lupus Foundation of America.

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Why I Tattooed a Symbol of My Lupus On Myself Forever

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I’ve always been fascinated by tattoos. Why people get them, what each piece of art on their skin means to them, or if it’s important at all. It’s hard to choose something to emblazon on you skin for the rest of your days and I had yet to come across something I thought would remain permanently significant.

But then lupus came along.

It’s taken many tears, much frustration, lots of pain and persistence to reach where I am right now, and there’s never been anything in my life that was worth documenting more.

And this is only the very first chapter in my encyclopedia of life.

I’ve been marked with a wolf and I choose to see that as neither a positive or negative, but something that just is.

I don’t believe this illness was given to me for a reason necessarily, but as it nonetheless has been given to me, it’s my job to take every opportunity presented to benefit as many people as I can.

Being given the chance to voice both my experience and my opinion through writing has given me not only an avenue to reach out to others in similar situations, but has aided me in my personal healing process.

I know I’ll never be able to change the fact that I have lupus – I’ll live with it forever – but there are things I know I can do to help others, both those with and without my illness.

One of these is to encourage conversation about lupus and chronic illnesses. The more we open up and speak about it, the more we can educate the general population and begin to remove the stigma that surrounds them.

I’ve had a wolf tattooed on the inside of my left arm for two reasons:

  1. To act as a constant reminder of all that I’ve been through and remember that no matter how hard it felt at the time, I made it through and came out the other side – smiling, as always.
  2. To be a conversation-starter and an icebreaker for a subject that is incredibly close to my heart, and about which I’m very comfortable speaking.

Every time someone asks about the significance of my tattoo I help break down the misconception that chronic illnesses don’t affect those who appear young and healthy.

Every time someone asks about my wolf I can start a conversation about what lupus means to me as someone who has been diagnosed.

And every time someone admires the piece of artwork I’ve had permanently etched into my skin, I know it’s doing its job.

I’ve already had comments from some who don’t understand the logic behind placing something on my body forever. I have to say that, with all due respect, I don’t care.

Most people will never truly know what it’s like to go through all I have and will over my lifetime. They may not need a continuous reminder to be strong no matter what life throws at me, and proud of all that I’ve accomplished. But I do.

And each morning when I wake up and see that little wolf looking back at me from the inside of my arm, I acknowledge my lupus and start my day strong.

I didn’t get my tattoo out of rebellion or to piss off my parents; I got it because lupus has changed my life – just as it has millions of lives – and I won’t live with it for the rest of my life in vain.

With or without this tattoo, lupus was always going to be my cross to bear. The only difference now is that I wear it on my sleeve, literally, for the world to see.

If you’re curious about the significance of the wolf in relation to lupus, feel free to check out my blog on Lupus News Today! 

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

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Why I’m Going to Stop Apologizing to Strangers for Having Lupus

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I’ve been paying close attention to my behavior and taking notes about the everyday quirks my wonderful chronic illness has brought me. I live in a place where it’s all hustle and bustle — all the time. Everyone is running off to catch a bus or a train, heading across town to a meeting or just trying to get to Starbucks before it gets crowded.

This crowd of people includes myself. There are times when I’m walking among a crowd of people and my knee gives out, or I trip and have to start walking slower because I’m pretty sure I just twisted my ankle and it’s swelling up to the size of a grapefruit. Yay, lupus.

I’ve found myself being extremely apologetic to the people around me, thinking it was a courteous thing to do. But then I thought: How many times a day do I apologize for something I can’t control? So I counted. 24. Keep in mind this was a day that I was commuting to work and running errands around the holidays. But that’s still 24 times I apologized to 24 random strangers for walking too slow, asking to sit down on the bus/train or falling like I’m in a romantic comedy set in the early 2000s. Unacceptable.

Let’s be clear, I’m quite aware of my body. I spent about 10 years of my life performing and dancing. Of course, this was pre-diagnosis, but I know how my body moves through everyday activities, and my special awareness is pretty good. In fact, my past dancing has really helped in listening to the aches and pains in my body and knowing my limitations with lupus, but that’s a post for a different time. I’m a tall, stocky dude who takes up a lot of space, and I just so happen to have a chronic illness that affects my giant limbs.

I realized every time I said sorry to someone that I didn’t actually mean it. It was a reaction because I felt guilty for getting in the way. So one of my many New Year’s resolutions is to stop doing this. Yes, if I trip or fall and take down some poor commuter half my size, I will apologize because I will actually mean it. But I’m not going to apologize to that young woman strutting down the runway that I call a sidewalk. And stop giving me side-eye because I’m walking too slow. Just go around me.

How many times a day are you throwing those meaningless apologies out there? I’ve found that most of my friends are doing this in some form, whether they have a debilitating illness or are just as healthy as they can be. Either way, it’s easy to get caught up and not realize how your daily interactions can affect someone else’s mood entirely. So be nice and hold a door open. If you’re in a rush, go around or offer them a seat. Like I always say, it’s the little things that can make a difference.

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13 Things People Who Have Lupus Wish Others Understood

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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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