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Finding Hope With Lupus: When Your Body Won’t Cooperate

August 21, 2016 By
Lupus hope

You’ve probably seen that quote before. It’s been shared thousands of times in lupus groups, on Instagram, on Pinterest. It sounds right. It sounds like the kind of thing you’re supposed to believe.

But I want to ask a quieter question. What does hope look like on a Tuesday when you can’t get out of bed? When the body hasn’t gotten the memo about getting better? When strength isn’t a motivational poster but the simple, unglamorous act of getting through another day?

This post isn’t going to tell you to be more positive. It’s about what hope actually is, on the days when it feels far away.

Hope That Isn’t Borrowed From Tomorrow

“Hope that it will get better.” That’s the kind of hope most of us have been taught. It lives in the future. It says: one day, things will improve. One day, the treatment will work. One day, the flare will end.

That hope is exhausting. Because the future hasn’t arrived yet. And the body keeps doing what the body does.

There’s a quieter kind of hope. It doesn’t ask the body to change. It doesn’t wait for better lab results or a good day that might not come. It’s more like a recognition: I’m still here. I can still notice small good things. I’m still a person with a life that matters, even if that life looks different than I planned.

This hope is not about tomorrow. It’s about today. It doesn’t ignore the pain or pretend the symptoms aren’t real. It just doesn’t let the pain be the whole story. The pain is there. And also: a good cup of coffee. A conversation that made you laugh. A song that landed differently. A quiet moment where everything felt still.

Those things don’t fix lupus. But they remind you that lupus isn’t everything.

More Than a Diagnosis

After you’ve lived with lupus for a long time, something strange can happen. The illness takes up so much room. The appointments. The medication schedules. The symptoms you track in a journal. The conversations where someone asks how you’re feeling and the answer is complicated. The things you used to do that you can’t anymore, or can’t do the same way.

It’s easy to start feeling like the illness is who you are. Like “person with lupus” overtook the person who existed before.

But here’s what’s still true, even if you haven’t felt it in a while: you are not your diagnosis. You are a person who happens to have lupus. The parts of you that have nothing to do with lupus didn’t disappear.

Your sense of humor. The songs you love. The way you make a certain friend laugh. The things you’ve survived that have nothing to do with your immune system. The memories that belong only to you.

Those are still there. They might be buried under a lot of heavy days, but they’re still there.

You can enjoy life with what you have and where you are. Even with the symptoms. Even with the diagnosis. Even on the days when managing this illness takes more than you thought you had.

The enjoyment doesn’t cancel out the hard parts, and the hard parts don’t have to cancel out the enjoyment.

What Strength Actually Looks Like

“Strength to hold on until it does.” It paints a picture of strength as gripping tighter. White-knuckling through the hard days until something changes.

But what if that’s not what strength is?

Real strength isn’t fighting what’s happening and adding another layer of struggle on top of it. The why me. The why now. The I’m too young for this. The I had plans and now lupus has messed all of them up. Those thoughts are understandable. Anyone would have them. But they add weight to an already heavy situation. They turn a hard day into a devastating one.

Real strength is being with what’s actually happening and leaving the second layer alone. It looks like resting without guilt. Canceling plans without telling yourself you’re letting people down. Saying “today is hard” without immediately adding “and that means I’m failing.”

It also looks like finding small pockets of joy, not because you forced yourself to be positive, but because you gave yourself permission to notice what’s still good. A series you love. A meal that tasted right. Someone who made you feel less alone.

There’s a kind of strength that’s quiet. It doesn’t announce itself. It doesn’t look impressive from the outside. It’s the strength it takes to accept that this is where you are right now, and still find a way to be here for the moments that matter. (I want to write more about what acceptance actually means in daily life — not giving up, but making peace with reality so you can move inside it instead of against it. I’ll link it here when that post is ready.)

You Don’t Have to Be Positive

When people say “stay positive,” they almost always mean well. They want you to feel better. They don’t know what else to say.

But there’s a hidden message underneath it: if you’re struggling, you’re doing something wrong. If you can’t find the bright side, you’re not trying hard enough. And when you’re exhausted and in pain, the last thing you need is one more way to feel like you’re failing.

You don’t have to replace a hard feeling with a better one. Sometimes the most honest and human thing you can say is: “This is hard. I don’t feel hopeful right now. This is where I am.” And that’s enough. That’s allowed.

Feeling terrible does not mean something has gone wrong with you. It means you have a body that is struggling, and you are a human being with feelings about that struggle. Of course you are. Why wouldn’t you be?

The Good Moments That Show Up on Their Own

Anyone who has lived with lupus for a while has probably noticed something. Even on the worst days, small moments arrive that feel okay. Five minutes where the pain eases up. A conversation that makes you genuinely laugh. A quiet morning where the light comes through the window and, for a moment, everything feels still.

You didn’t manufacture those moments. You didn’t earn them by being positive enough. They showed up on their own, the way a breeze shows up on a hot day.

Sometimes people notice them without trying. A laugh breaks through. A song does something unexpected. But if you’ve stopped noticing, that’s not a personal failure. It’s what happens when you’ve spent months or years training your attention on what’s wrong.

Your brain got very good at scanning for pain and fatigue and threat because it was trying to protect you, and that makes sense. But when the only thing you’re looking for is what’s wrong, the small good things can pass through unnoticed. Not because they aren’t there. Because you weren’t looking in that direction.

There’s another option, if you want it. Not forcing gratitude. Not writing lists. Not doing anything that feels like homework. Just opening the door a crack in the other direction.

Wondering: is there anything here that isn’t painful right now? Is there anything that feels even a little bit okay? You don’t have to find something. But sometimes you do, and it surprises you.

Those moments, when they show up, remind you of something: there is a part of you that illness hasn’t taken away. Not the body, which is doing its own unpredictable thing. But you. Your humor. Your curiosity. The way you notice light coming through a window. That’s still intact.

This isn’t about chasing those moments or trying to make them happen. It’s about noticing them when they do. They’re easy to miss when you’re focused on everything that’s wrong. But they’re there. And they count.

The Hard Days Are the Hard Days

Here’s the thing I don’t want to skip over: the hard days are real.

The pain is real. The fatigue that makes you feel like you’re moving through water is real.

The grief about what’s been lost, about the life you thought you’d have, about the things you can’t do anymore. That grief is real and it deserves to be acknowledged.

Nothing is meant to pretend otherwise. I’m not asking you to look on the bright side or count your blessings.

But the hard days don’t have to be hopeless. You don’t have to add hopelessness to the hard day. The hard day is enough on its own.

You can be in pain and not also believe that the pain means your life is ruined. You can be exhausted and not also tell yourself that you’re failing.

The physical struggle is heavy enough without piling hopelessness on top of it.

For the Days You Need It Most

Sometimes things evolve. You start in one place and arrive somewhere slightly different.

Here’s where I landed:

“At the end of the day, all you need is hope and strength. Hope isn’t waiting for the body to cooperate. It’s noticing that life still holds good things, even when the body doesn’t. Strength isn’t fighting what is but being with what is, and finding small moments of joy along the way.”

That kind of hope and that kind of strength. They’re available right now. Not in some imagined future when the body finally behaves. Right now. Today. Even on the days you need them most.

You can enjoy life with what you have and where you are. Not because lupus isn’t hard, but because you are more than lupus.

P.S. Did you know that if you’re living with lupus or many other health conditions you can Get Paid To Share Your Experience With Lupus, Autoimmune And Other Diseases?

You can get paid for your time and contribution when you are participating in research studies that involve phone interviews, online surveys, that kind of thing. This is one small way to contribute to research while putting a little money back in your pocket.

Learn more and participate HERE

References

💜

Filed Under: Blog, Inspiration

A Downside Of Prescription Drugs For Lupus

August 21, 2016 By

Lupus Prescription Side Effects

Image Credit: Sameecards

There is no one perfect treatment for lupus, and many lupies have to take many medications for different symptoms and different reasons. Drugs can’t cure lupus but they can control many symptoms and often can prevent or slow organ damage.

As a result many patients have to find a balance and adjust their dosages so that they avoid organ damage, get a symptoms relief and minimize side effects. This is NOT an easy task!

Leave a comment how do you manage so many medications?

P.S. Suffer from lupus? A reputable supplement company is giving you a FREE bottle of high quality probiotic and a container of premium protein. It’s truly free, no strings attached. Get it HERE

Filed Under: Blog, Lupus Struggle

Lupus and Germs: Why a Simple Cold Isn’t Simple

August 20, 2016 By
Lupus germs
Image Credit: KickRocksLupus

You’ve probably heard someone say it: “You can’t catch lupus.”

That’s true. Lupus isn’t contagious. You can’t get it from a handshake, a hug, or sharing a meal.

But here’s what almost nobody talks about: the reverse is what’s dangerous.

Not you catching lupus from someone else. Someone else’s germs catching up to you.

When the body has lupus, the immune system isn’t doing its actual job anymore. The job it was designed for. Protecting against outside threats.

On top of that, many of the medications doctors prescribe to keep lupus under control, like prednisone, methotrexate, and mycophenolate mofetil, work by deliberately suppressing the immune system.

That’s the whole point. Calm down the overactive immune response so it stops attacking the body.

But that same suppression means fewer defenses against the outside world. Less protection when a cold virus shows up.

If you’re living with lupus, you already know this in your bones. If you love someone who is, this might be the most important thing you read about their day to day reality.

Why a Simple Cold Isn’t Simple

Here’s the paradox that makes lupus so hard to explain.

The immune system is overactive. It attacks the body’s own healthy tissue, causing inflammation in the joints, the skin, the organs.

That’s the autoimmune part. But at the same time, it’s underperforming where it actually matters. It doesn’t always respond to real threats the way a healthy immune system would. Viruses, bacteria, infections can slip through more easily.

And then there are the medications that doctors prescribe. Drugs like prednisone, methotrexate, and mycophenolate mofetil work by deliberately suppressing the immune system.

That’s the whole point. Calm down the overactive immune response so it stops attacking the body. But that same suppression means fewer defenses against the outside world. Less protection when a cold virus shows up.

So when someone with lupus catches a cold, it’s not just a cold. The immune system, already confused and already suppressed, gets activated to fight the virus.

And then it doesn’t settle back down. It keeps going. Now it’s attacking the virus and the body at the same time.

A cold triggers a flare. A flare means weeks of recovery. Sometimes months.

This is what the Lupus Foundation of America calls the “double whammy.” You get sick from the illness itself, and then your lupus gets worse because of it.

Two battles at once, in a body that was already fighting a war on the inside.

The Daily Reality of Protecting a Vulnerable Immune System

If you’re reading this and you have lupus, you know exactly what I am going to talk about next.

It’s the pause before you say yes to anything. The mental checklist that runs in the background of every invitation: How many people will be there? Is it indoors? Has anyone been sick?

It’s the awkward moment when you ask a friend, “Hey, are you feeling okay? I just have to check because of my immune system,” and hope they don’t think you’re being difficult.

It’s the family gathering you skip because your nephew has a runny nose and nobody thought to mention it. The coworker who comes to the office with “just a little something” and doesn’t realize they just handed you a week in bed.

The guilt of RSVPing no to things you genuinely want to attend, because the risk math doesn’t work out in your favor. (And if guilt has been a theme in your life longer than lupus has, you might understand this more than most.)

It’s also the loneliness. The isolation that builds up over time. Friends who stop inviting you because you always say no, and they don’t understand why. Family members who think you’re being dramatic. The quiet voice in your own head that wonders: Am I being too careful? Am I just making this a bigger deal than it is?

You’re not making it a bigger deal. You’re living in a body that can’t protect itself the way other people’s bodies can. That’s not paranoia. That’s paying attention.

The Numbers Behind the Risk

These aren’t meant to scare anyone. They’re here because most people, including a lot of people with lupus, have never been told just how serious this actually is.

Infections are responsible for a significant portion of hospitalizations among people with lupus, ranging from about 13% to 37% depending on the study.

Among lupus patients, the lifetime risk of a serious bacterial infection sits around 50%. And when an infection does take hold, it can be more severe and harder to treat than it would be in someone with a healthy immune system.

The Lupus Foundation of America notes that the combination of the disease itself and the medications used to manage it creates a heightened vulnerability. Lupus patients on corticosteroids or combined immunosuppressants face infection rates substantially higher than those not on these drugs. Even something as routine as the flu can spiral into something more dangerous when the immune system is already compromised.

A 2023 medical review by Barber and colleagues, examined the dual impact of the disease and its treatments on infection risk in lupus. The findings were clear: infections play a substantial role in the health outcomes of lupus patients, accounting for a large proportion of hospitalizations and a meaningful share of serious complications.

The numbers are not theoretical. They are the reason this conversation matters.

If You Have Lupus

Every person’s lupus is different. Someone on hydroxychloroquine alone is in a different situation than someone on high dose prednisone plus mycophenolate.

Understanding where you fall on that spectrum, with the help of a rheumatologist, can make the difference between living in fear and living with reasonable awareness.

The basics matter more than people think. Hand washing. Avoiding crowded indoor spaces when something is going around. Wearing a mask in places where it makes sense. These are everyday tools. Some people use them, some don’t. The point is that each person gets to decide what feels right for their own body.

And then there’s the part that’s harder than any practical measure: saying no. Telling a friend you can’t come because someone in the room might be sick. Asking a loved one to stay home when they have a cold. Setting a boundary and holding it, even when it feels awkward, even when people don’t understand. That’s not being difficult. That’s taking care of a body that needs more care than most.

Protecting yourself doesn’t make you high maintenance. Small everyday boundaries are not small at all. They’re what keep you safe.

If You Care About Someone With Lupus

This part is for the partners, the parents, the friends, the coworkers, the neighbors. If someone in your life has lupus and you want to understand what helps, here’s where to start.

When people stay home because they’re sick, that’s one of the most caring things they can do for someone with a compromised immune system. A cold that barely registers for you can mean weeks of illness and a lupus flare for them.

Calling, FaceTiming, texting, dropping soup on the porch, those are the alternatives. Showing up in person is not the kind thing when you’re carrying germs.

When someone with lupus cancels plans because they heard you coughing, that’s not rejection. They want to see you. They’re making a calculation about what their body can handle, and in that moment, the math doesn’t work. Understanding that without taking it personally is a gift.

When they tell you they’re more vulnerable to infection than you are, believe them. You don’t need to understand the science. You just need to trust that they know their own body.

The most supportive thing you can do is see their limits with understanding and not add to what they already struggle with. Limits are just limits. Respect them without making them heavier than they already are.

Ask what they need instead of assuming. Sometimes it’s simply saying, “I get it. I’ll be here when you’re ready.” Those small acts of understanding are real support. Not a gesture. Just the practical, day to day kind of love that shows up in actions more than words.

The Hardest Part No One Talks About

There’s a particular kind of exhaustion that comes with this. Not the physical kind.

It’s the exhaustion of constantly scanning for risk in situations other people move through without a second thought. The mental load of evaluating every handshake, every invitation, every shared space for potential danger. The emotional weight of wondering if you’re being too careful or not careful enough. The loneliness of living with a threat most people can’t see and don’t think about.

It’s the friends who drift away because they don’t understand why you keep saying no. The family members who think you’re exaggerating. The strangers who give you a look when you take precautions they don’t understand. And underneath all of it, the worst voice of all, the one inside your own head that whispers: maybe they’re right.

If that’s you, here’s what’s true: protecting yourself when you have lupus is not paranoia. It’s not high maintenance. It’s not an overreaction. It’s what your body needs. And if someone in your life can’t understand that, the gap in understanding belongs to them, not to you.

There isn’t a perfect solution for navigating a world full of germs in a body that can’t afford to catch them. But slowly, a middle ground can be found between vigilance and living. Lowering expectations on the hard days. Trusting instincts when something doesn’t feel safe. Giving yourself grace when protecting yourself feels lonely.

Here’s what it comes down to

Lupus is invisible. Most people can’t see what’s happening inside the body. They can’t see the immune system that’s both overactive and underperforming.

They can’t see the medications that keep someone alive while making them more vulnerable. They can’t see the mental math that runs every single day: is this safe, is this worth it, can I afford to get sick right now.

But you know, and now they know too.

If you’re living with lupus, I hope this helps you feel a little less alone in the vigilance. If you love someone who is, I hope this helps you understand why they sometimes seem “too careful.” They’re not. They’re doing exactly what their body needs.

Something Worth Remembering

Learning about infection risk can feel like one more thing to worry about in a body that already demands so much. When the numbers first sink in, the weight of them settles.

But knowing the risks and living in fear are two different things. The goal isn’t to be perfect. It’s to be informed, and to give yourself grace on the days when protecting yourself feels lonely or exhausting or impossibly hard.

You’re not overreacting. You’re not being difficult. You’re navigating a body that needs more care than most, and you’re doing it every single day.

Protecting yourself isn’t giving up on life. It’s making it possible to keep living it.

💜

P.S. Did you know that if you’re living with lupus or many other health conditions you can Get Paid To Share Your Experience With Lupus, Autoimmune And Other Diseases?

You can get paid for your time and contribution when you are participating in research studies that involve phone interviews, online surveys, that kind of thing. This is one small way to contribute to research while putting a little money back in your pocket.

Learn more and participate HERE

References

Filed Under: Blog, Lupus Triggers

5 Lupus Facts That Changed the Way I Think About Living With Lupus

January 25, 2016 By
Lupus facts

When I first started researching lupus after my diagnosis, I wanted to understand what was happening to me. So I went online and read everything I could find. Fact sheets. Medical articles. Lists of statistics.

They were accurate, I’m sure. But none of it captured what it actually feels like to live inside this body.

I’ve been thinking about that gap a lot. The facts matter. They really do. But the way we talk about them matters just as much. So I wanted to walk through five lupus facts that deserve more than a bullet point not from a textbook, but from someone who’s been there.

If you’re living with lupus, I hope this makes you feel seen. If you love someone who is, I hope this helps you understand what’s happening behind the “I’m fine.”

Fact 1: Lupus itself is not fatal but what it does to your body is.

Lupus Is Not Fatal

Image Credit: Heidi Rader, My Invisible Journey

This is the fact that scared me the most.

Lupus is an autoimmune disease, which means your immune system, the thing designed to protect you, attacks your own healthy tissue instead. The disease itself isn’t directly fatal the way some cancers can be. But the complications? Those are real and they deserve to be taken seriously.

Lupus can cause inflammation in almost any organ system. The kidneys. The heart. The lungs. The brain. Over time, that inflammation can lead to permanent damage.

Lupus nephritis, which affects the kidneys, is one of the most serious complications and it’s not rare. Research has shown that up to 60% of people with lupus will develop some degree of kidney involvement.

That’s the part no one prepares you for. You get diagnosed with something most people have never heard of, and then you slowly learn that the real danger isn’t the disease itself. It’s what it can quietly do while you’re busy trying to live your life.

But here’s what I also want you to know: early detection and treatment have changed outcomes dramatically. Rheumatologists can monitor organ function before symptoms even show up.

Medications have improved. And many, many people with lupus live full, meaningful lives with careful monitoring, with good medical care, and with the kind of self-awareness that comes from living in a body that demands you pay attention.

If this fact scares you, I understand. It scared me too. But knowing the risk is not the same as being consumed by it. Awareness is part of protection.

Fact 2: Only 31% of adults with lupus are able to work full time.

Working With Lupus

Image Credit: @mctd-support

When I first read this number, I felt something complicated. Part of me felt validated. Like, okay, so it’s not just me. Part of me felt grief. Because work isn’t just about money. It’s about identity. Purpose. The feeling that you’re contributing something to the world.

Lupus takes a lot of things. But losing your career, or scaling it back, or stepping away entirely, that’s a particular kind of loss that doesn’t get talked about enough.

The fatigue alone can make an eight-hour workday feel impossible. Add joint pain, brain fog, and the unpredictability of flares, and suddenly even part-time work requires everything you’ve got.

Before I say anything else…

You are not lazy.

I wrote a whole post about this because I needed to hear it myself. If you’ve ever felt shame about what you can’t do anymore, you might find something there that helps.

Your body is doing something incredibly hard every single day. Fighting your own immune system while trying to show up for meetings, deadlines, kids, dinner, life, that’s not laziness. That’s strength most people will never see.

Some people with lupus find ways to work remotely, or flexibly, or in roles that accommodate their energy levels. Others step back entirely.

Neither path is a failure. Small everyday activities become big accomplishments when you’re living with chronic illness, and that includes showing up for work whatever that looks like for you right now.

Fact 3: 97% of people with lupus say they downplay symptoms to avoid upsetting their families.

People With Lupus

Image Credit: High Heels and Training Wheels

This one hit me hard.

Ninety-seven percent. That’s almost everyone. Almost every single person reading this who lives with lupus has, at some point, smiled and said “I’m fine” when they were absolutely not fine. Has hidden how much pain they’re in. Has pushed through a flare because they didn’t want to worry anyone.

We do it out of love. We do it because we see the concern on our partner’s face, or because our kids shouldn’t have to carry this, or because our parents already worry enough. Putting your happy face on becomes second nature. (I have another post coming about this, the whole exhausting act of performing wellness. I’ll link it here when it’s live.)

But here’s what I’ve learned, slowly: the people who truly love you can handle the truth. And hiding your symptoms all the time, that takes energy you don’t have to spare. It’s draining, plain and simple. You’re already tired from the lupus. You shouldn’t have to be tired from pretending, too.

You are not a burden. Your illness is the burden. And I want you to know that being honest about how you’re actually doing isn’t something you have to earn or qualify for.

You’re allowed to tell the truth about your own body. You don’t have to protect everyone from what you’re going through. Sometimes the kindest thing you can do for both of you is to let them in.

Fact 4: Lupus is more common than cystic fibrosis, leukemia, muscular dystrophy, and multiple sclerosis combined.

Lupus is common

 Image Credit: Molly’s Fund Fighting Lupus

Most people have heard of cystic fibrosis. Most people have heard of leukemia and MS. Almost nobody knows that lupus affects more people than all of those diseases put together.

There are roughly 1.5 million Americans living with lupus, and an estimated 5 million worldwide. And yet it remains one of the least recognized and least funded major diseases. One national survey found that 53% of Americans said they knew very little, nothing, or had never heard of lupus. More than half the country.

So why the gap? Part of it is that lupus symptoms including fatigue, joint pain, rashes, fever, overlap with so many other conditions. It’s famously hard to identify.

Part of it is that lupus research has historically been underfunded compared to diseases with similar prevalence, which means fewer treatment breakthroughs and less public awareness.

It’s a cycle: low visibility leads to low funding, and low funding keeps visibility low.

And then there’s the diagnosis process itself. Lupus is often diagnosed by exclusion. That means your doctor doesn’t find lupus. They rule out everything else first. There is no single definitive test for lupus and the conditions it gets mistaken for, like fibromyalgia and Lyme disease, often don’t have simple tests either.

So you go from specialist to specialist, test to test, while they cross things off the list. On average, it takes nearly six years from the time someone first notices their symptoms to get an accurate lupus diagnosis.

A majority of people with lupus or about 63% report being incorrectly diagnosed at first. More than half of those see four or more different healthcare providers before someone finally names what’s happening.

That’s years of not knowing. Years of being told it might be in your head. Years of your body fighting against you while you wait for someone to connect the dots.

This fact isn’t just a statistic. It’s a call to pay attention. To talk about lupus. To share what you know. Because when more people understand what this disease actually is, fewer people have to spend years being told there’s nothing wrong with them.

Fact 5: Lupus is unpredictable.

Lupus is unpredictable

Image Credit: Project Lupus Education & Awareness Campaign by Anna Lindley 

You can wake up feeling good. Make coffee. Answer emails. Start to think, maybe today is a normal day.
And then by noon, you’re back in bed.


That’s the thing no one prepares you for. Not the diagnosis itself but the uncertainty. Chronic illness doesn’t have days off. A flare up can happen any time and ruin your plans, and there’s no way to predict it. No warning system. No countdown clock that says, you have three good hours left, use them wisely.


Living in a body you can’t trust takes a toll. Not just physically. Emotionally. You stop making plans. You hesitate before saying yes to anything. You learn to qualify every commitment with “if I’m feeling up to it,” which is code for “I want to be there, but my body will pick for me.”


I don’t have a solution for the unpredictability. Nobody does. But I’ve been learning, slowly, to make a kind of peace with it. Not the toxic positivity kind, not “just think positive” or “everything happens for a reason.”

I mean the practical, day-by-day kind. Lowering expectations on hard days. Celebrating the good ones without clinging to them. Giving yourself a break when your body demands it, without the guilt.


I’m working on a longer piece about this what it looks like to live with uncertainty when your body doesn’t follow a script. I’ll link it here when it’s ready.


If you are in a flare right now, or coming out of one, or bracing for the next one: you are doing better than you think. Rest is not failure. Rest is what your body needs, and giving it that rest is an act of wisdom, not weakness.

What the Numbers Can’t Tell You

Learning these facts can feel overwhelming. I know. When I first gathered all of this, I sat with it for a long time and felt the weight of every number.

The facts are real, and they matter. But they aren’t a prediction of what tomorrow will look like for you. My mind often wants certainty my body can’t promise, and I’m still learning to make peace with that.

I don’t have a tidy ending for this. I’m not sure there is one.

Just the quiet reminder that you’re not a statistic, you’re someone living through something hard, and you’re still here.

That counts for more than any number. 💜

P.S. Did you know that if you’re living with lupus or many other health conditions you can Get Paid To Share Your Experience With Lupus, Autoimmune And Other Diseases?

You can get paid for your time and contribution when you are participating in research studies that involve phone interviews, online surveys, that kind of thing. This is one small way to contribute to research while putting a little money back in your pocket.

Learn more and participate HERE

References:

Filed Under: About Lupus, Blog

Lupus Is a Whole-Body Disease. Here’s What That Actually Means

January 25, 2016 By

When someone asks what lupus feels like, it’s hard to know where to start.

Joint pain on Monday. A rash on Tuesday. Brain fog on Wednesday. It moves. It shifts. You never know which part of you is going to act up next.

This isn’t one problem in one place. It’s a condition that touches everything. That’s what the word “systemic” means, but nobody explained what that actually looks like until you were living it.

If you’re reading this, you probably already know. But maybe nobody has put words to the experience yet. Maybe you’ve been handed a list of symptoms but never a sense of what it’s like to live in a body where nothing stays in one lane.

What “Systemic” Actually Means

Lupus is called a systemic disease. That word gets used a lot, but it’s worth slowing down to understand what it’s really saying.

The immune system isn’t confined to one organ. It lives everywhere. In the blood. In the tissues. In every organ system. So when it goes wrong, when it starts attacking healthy tissue instead of protecting it, the damage can show up anywhere.

That’s why lupus looks different in every person. One person’s lupus shows up mostly in the joints. Another person’s affects the kidneys. Someone else has skin involvement and brain fog. There’s no predictable path. The disease is as individual as the person who has it.

And that’s also why it took so long to get diagnosed. The symptoms didn’t stay in one lane, and neither does the disease. That confused doctors. That made many people feel like they were losing their minds. They weren’t. Living with a condition that is, by definition, unpredictable and everywhere, makes diagnosis a long and frustrating process.

Systemic Lupus Symptoms

Looking at a list like this can feel overwhelming. Remember that no one experiences every symptom, and lupus looks different for everyone.

Image Credit: Health Line

Joints and Muscles: The Pain That Moves

Almost everyone with lupus has joint pain and swelling at some point. It’s usually one of the first symptoms to show up. But it doesn’t behave like typical arthritis.

One day it’s in the hands. The next day it’s in the knees. Then it disappears. Then it comes back somewhere else. The unpredictability is as hard as the pain itself. It’s hard to plan around it. Hard to brace for it. Many people wake up and find out where it landed today.

And about one third of people with lupus also have fibromyalgia, which means a second layer of pain on top of the lupus pain. Widespread muscle aches. Tender points. Fatigue that never seems to lift. The two conditions overlap, and when they do, the exhaustion becomes its own full-time job.

Some people develop arthritis over time. The kind that shows up on X-rays. But even when it doesn’t, the pain is real. The swelling is real. And the way it moves through the body without warning is one of the most disorienting parts of living with lupus.

The Skin: When Lupus Becomes Visible

The butterfly rash across the cheeks and nose is the most recognizable lupus symptom. But it’s far from the only one.

Photosensitivity means the sun becomes a problem. A few minutes of exposure can trigger a rash or a flare. Discoid lesions leave round, scaly patches that can scar. Raynaud’s phenomenon turns fingers and toes white or blue when they get cold. Hair loss. Mouth ulcers. Skin that feels like it’s betraying you in ways that are hard to hide.

These are the visible symptoms. The ones people can see. And that visibility is complicated.

Sometimes people ask questions. Sometimes they stare. Sometimes they worry. Sometimes they look away. The skin is the one place where lupus becomes visible to the outside world, and no one chooses that. No one chooses to have their illness written on their face or their hands. But there it is.

And even when people mean well, even when they say “you look good,” it can sting. Because looking good and feeling terrible can exist at the same time. The skin tells one story. The inside tells another.

The Organs: The Symptoms Nobody Can See

This is where lupus gets serious.

Lupus can cause inflammation in the kidneys, the heart, and the lungs. These are the invisible symptoms. The ones that don’t show up on the outside. The ones that can make someone sound dramatic when they try to explain them to someone who’s never felt them.

Lupus nephritis affects the kidneys. It’s one of the most serious complications of lupus, and it’s not rare. Research shows that 40 to 60% of people with lupus will develop some degree of kidney involvement at some point during their illness.

The kidneys filter waste from the blood, and when lupus causes inflammation there, it can lead to permanent damage if it’s not caught and treated early. That’s why regular monitoring matters. Blood tests. Urine tests. Watching for signs before symptoms even show up.

Pleurisy is inflammation of the lining around the lungs. It makes breathing hurt. Every inhale feels sharp. It’s the kind of pain that makes someone hold their breath without meaning to, because breathing deeply is just too much.

Pericarditis is inflammation of the protective sac around the heart. It can cause chest pain that feels like the heart is under attack. And sometimes it is.

These are the invisible symptoms. The ones that are hardest to explain because nobody can see them. The ones that require vigilance, regular appointments, close monitoring. The ones that can make someone feel like they’re being overly cautious when they’re actually just paying attention to a body that needs more care than most.

Paying attention to the body isn’t the same as living in fear of it. It’s just being realistic about what lupus can do and catching problems early when treatment can still make a difference.

The Brain and Nervous System: The Symptoms That Make You Doubt Yourself

Brain fog. Cognitive dysfunction. Trouble finding words. Losing your train of thought mid-sentence. Memory problems. Headaches that won’t quit.

These are some of the hardest symptoms to talk about because they affect who you feel like you are.

When you can’t remember a word you’ve used a thousand times, when you walk into a room and forget why you went there, when you feel like you’re not as sharp as you used to be, it’s easy to start wondering if something is wrong beyond the lupus. But this is lupus.

The systemic inflammation reaches the brain. It affects concentration. It affects memory. It affects mood.

Some people with lupus also experience anxiety and depression. Lupus can affect the brain and nervous system in ways that influence memory, concentration, mood, and thinking. And in rarer cases, lupus can cause seizures or strokes.

The brain symptoms are real. They’re not in your head in the way people sometimes mean when they say that. They’re a direct result of what lupus is doing to the central nervous system. And they don’t mean anyone is broken. They mean the brain is dealing with inflammation it was never supposed to handle.

You are not your cognitive function. You are not the speed of your processing or the sharpness of your recall. You are the person experiencing those things, and that person is still here.

Invisible and Silent Symptoms: Fatigue, Anemia, and Everything Else

Then there are the symptoms that don’t fit neatly into any category. The ones that often go unnoticed by everyone except the person living with them.

Anemia, which means the body isn’t making enough red blood cells to carry oxygen where it needs to go. That adds to the fatigue. Blood clotting issues, which can be dangerous if they’re not monitored. Hair loss that shows up in clumps in the shower. Mouth ulcers that make eating painful. Digestive problems that nobody warned you about.

And the fatigue. The crushing, bone-deep fatigue that is the most common and most disabling symptom of lupus.

It’s not the kind of tired that a good night’s sleep fixes. It’s the kind of tired that makes getting out of bed feel like a marathon. The kind that makes people think you’re lazy when you’re actually fighting a war inside your own body. The immune system is constantly activated. It’s burning through energy even when you’re lying still. That’s not laziness. That’s lupus.

The fatigue is real. It’s not in your head. And it’s one of the hardest symptoms to live with because it’s invisible and it never seems to let up.

When the Symptoms Drag You Down

If you just read through all of that and felt overwhelmed, I understand.

The list is long. The body is complicated. It’s easy to look at everything lupus can do and feel like you’re falling apart. Like the body is a battlefield and you’re losing.

But here’s a different way to hold it.

The symptoms are real. The list is long. But you are not the list. You are the person living through it. And the fact that you’re still here, still managing, still showing up in whatever way you can, that’s not weakness. That’s evidence of something in you that hasn’t been broken.

You are not falling apart. You are living with something difficult. And those are two very different things. Finding hope doesn’t mean ignoring the hard parts. It means recognizing that you’re still here, and that counts for something.

P.S. Did you know that if you’re living with lupus or many other health conditions you can Get Paid To Share Your Experience With Lupus, Autoimmune And Other Diseases?

You can get paid for your time and contribution when you are participating in research studies that involve phone interviews, online surveys, that kind of thing. This is one small way to contribute to research while putting a little money back in your pocket.

Learn more and participate in research studies HERE

References

Filed Under: About Lupus, Blog

Attention: How To Recognize Early Lupus Symptoms

January 25, 2016 By

Early Lupus Symptoms

Lupus is an autoimmune disease in which the body’s immune system mistakenly attacks healthy tissue. It has a variety of symptoms and it affects each individual uniquely. Some people have severe symptom while others have only few mild ones.

Early lupus symptoms are similar to those of other health conditions and as result having them does not necessarily mean you have lupus. If you experience any of these symptoms or suspect you may have lupus you should always see a doctor for a correct diagnosis.

Hair Loss

Lupus can cause hair loss due to inflammation of the skin and scalp. Some even have thinning of eyebrows, eyelashes, beards and other body hair. Hair becomes ragged, feels brittle and breaks easily.

A successful lupus treatment can result in re-growth of the hair. However, hair loss may become permanent if lupus caused lesions on your scalp.

Skin Rash

Another typical early lupus symptom is the butterfly-shaped rash that appears on both cheeks and over the bridge of the nose. It can occur suddenly or appear after exposure to sunlight.

Lupus can also result in non-itchy lesions in other body parts and may even cause hives. Many patients are sensitive to sun or even artificial lighting with some experiencing discoloration of toes and fingers.

Pulmonary Issues

Research studies show that about 50% of people with SLE experience lung involvement during the course of their disease. There are 5 main types of lung problems that can occur in lupus:

  • Pleuritis or pleurisy when the 2-layered membrane surrounding the lungs called pleura is affected by inflammation. People with pleuritis often experience pain when taking deep breaths due to inflammation creating more pressure on the lungs.
  • Acute lupus pneumonitis affects up to10% of lupus patients and is a serious condition that progresses quickly. It requires an immediate attention and often is treated with immuno-suppressive drugs and corticosteroids. Common symptoms are shortness of breath, chest pain and a dry cough that may bring up blood.
  • Chronic (fibrotic) lupus pneumonitis develops gradually over years. Often people do not realize that they have it because they cannot connect the initial symptoms with lupus.
  • Pulmonary hypertension can affect about 10% of people with lupus. It is a unique form of high blood pressure in which the blood vessel thickens and reduce the amount of blood that goes to the lungs. This effect creates a condition called hypoxia when you body’s tissues become deprived of oxigen.
  • “Shrinking lung” syndrome creates a sense of breathlessness and reduced chest expansion.

Fatigue

According to research, about 90% of patients with lupus experience some level of fatigue. In most cases it is caused by complications and underlying medical problems such as fibromyalgia, thyroid issues, depression, anemia or a kidney problem. Sometimes fatigue is a side effect of medication.

Fever

One of early lupus symptoms is low grade fever without any apparent reason. Low grade fever could be a sign of inflammation, imminent flare-up or infection. It can be helpful to be aware of this fact and watch for a higher temperature because it can be an early indicator of a lupus flare up or active infection.

Kidney Inflammation

People with lupus may develop a kidney condition known as nephritis that makes it harder for kidney to filter waste and toxins from the blood. Signs associated with nephritis include high blood pressure and swelling in the lower legs and feet.

According to the Lupus Foundation of America, nephritis usually begins within 5 years of the start of lupus. Frequent urination, darker urine and blood in the urine are also common signs of nephritis to watch for. 

Gastrointenstinal Problems

Patients with lupus usually complain of occasional heartburns, acid indigestion or other gastrointestinal issues. 

Painful Swollen Joints

Lupus can cause pain, stiffness and swelling in your joints, especially in the morning. It may be mild at first, gradually becoming more visible. Joint problems come and go just as other lupus symptoms.

Thyroid Problems

Many patients with lupus also develops autoimmune thyroid disease. Your body metabolism is controlled by the thyroid gland that affects all bodily functions and vital organs including kidney, heart and lungs. Low thyroid function of hypothyroidism can result in weight gain, dry skin, dry hair and moodiness.

Dry Eyes And Mouth

Lupus may cause you have a dry mouth and gritty, dry eyes as well. This is because some patients develop another antoimmune disorder refered to as Sjogren’s Syndrome.

This disorder causes malfunctioning of the glands responsible for secreting tears and saliva. Women may also experience dryness of vagina. Doctors can give medications to increase saliva and tears secretion after they rule out lupus. 

Other Symptoms

Other possible early lupus symptoms include chest pain, muscle pain, depression and osteoporosis. Other though more rare symptoms are seizures, anemia and dizziness. Interested to learn more about lupus symptoms? Check out this infographic that can help you to visualize systemic lupus symptoms and how lupus can affect your body

P.S. Suffer from lupus? A reputable supplement company is giving you a FREE bottle of high quality probiotic and a container of premium protein. It’s truly free, no strings attached. Get it HERE

Filed Under: About Lupus, Blog

What Is SLE: Here Is What You Need To Know

January 25, 2016 By

What is SLE

The immune system is responsible for defending your body against bacteria and dangerous infections. When the immune system fails to recognize and attacks its own body confusing it for foreign invades, an autoimmune disease can occur. Systemic lupus erythematosus or SLE is one among over 100 autoimmune conditions known today. 

What Is Lupus?

SLE is a chronic inflammatory disease that can affect almost any organ or body’s system. It follows a relapsing and remitting course causing a widespread tissue damage and inflammation. Lupus can affect lungs, skin, joints, blood cells, kidneys, brain and heart.

According to the Lupus Foundation of America, at least 1.5 million people in the United States and 5 million people worldwide are living with lupus. Each year more than 16,000 new cases of lupus are reported in the United States alone.

SLE more often affects women than men with a ratio 10 to 1. In addition women of color who have African, Hispanic or Asian descent are 2 to 3 times more likely to get lupus than white women. However, it is important to say that people of all races and ethnicities can develop lupus.

Five types of lupus have been discovered, however SLE is the most serious and common type of lupus.

Impact Of Lupus

Image Credit: Lupus Foundation of America

Causes

The main cause of SLE is still unknown, however there is a strong scientific evidence that it is caused by a combination of genetic predisposition and environmental factors. 

Some of the possible triggers of SLE include infection, viruses, sunlight, and other environmental factors. Hormonal changes also play a role in SLE. That is why it is more common in young women than men. Genetic factors also make some people prone to autoimmune diseases.

Studies show that lupus patients may not be able to effectively get rid of damaged and old body cells. The result is this inflammatory reaction.

Symptoms

Symptoms of SLE may vary greatly from individual to individual depending on the bodily tissue affected. People with lupus may experience periods of flares when symptoms show up, and periods of remission when symptoms are under control.

During a lupus flare symptoms begin suddenly with fever. It is important to watch for warning signs or early lupus symptoms that help to recognize a coming lupus flare. Flares can be classified as mild, moderate, or severe depending on the severity of symptoms.

In other patients the symptoms may develop gradually over months or years. They feel unwell; suffer from frequent episodes of fever or any of the symptoms listed below. The symptoms may be minimal or absent sometimes. 

-Muscle pain and swollen or painful joints

-Red rashes on the face

-Chest pain when taking deep breaths

-Sensitivity to sunlight

-Unusual hair loss

-Severe fatigue

-Swollen glands

-Mouth ulcers

-Edema or swelling in legs

-Anemia

-Blood clotting complications

-Raynaud’s syndrome (Fingers tingle and turn white or blue when cold)

Other symptoms depend on the part of the body affected by SLE such as the heart, digestive tract etc.

Diagnosis

Diagnosis of lupus can be difficult and in some cases it can take many years because it is a multi-symptom disease that can affect nearly every organ system in the body. This makes lupus manifestation highly variable with some symptoms overlapping with other health conditions.

Your doctor will carry out a physical exam to check for the common signs of SLE. Since there is no single diagnostic test, screenings will help your doctor end up with an informed diagnosis. They include a lupus blood tests, lupus antibody tests, chest x-ray and urinalysis.

After your symptoms and test results evaluation doctor makes an assessment and diagnosis based on specific criteria. In 2012 American College of Rheumatology (ACR) introduced 11 diagnostic criteria for SLE that produce a sensitivity of 85% and a specificity of 95% for diagnosing lupus. 

Treatment

Current SLE treatments offered by a conventional medicine are only aimed at easing its symptoms but not curing it. The treatment will vary depending on which parts of the body are affected and how severe is the damage of the tissue. It is recommended that you go for regular medical checkups instead of waiting for the disease to flare.

Treatments may include:

-Steroid creams for dealing with rashes

-Anti-inflammatory medications to ease stiffness and joint pains

-Varying doses of corticosteroids to reduce the immune response

-Anti malarial drugs such as hydroxychloroqiune and chloroquine are used for joint and skin problems. An eye test is recommended if these drugs are used because they can accumulate easily in the eye.

Lupus

From Visually.

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Filed Under: About Lupus, Blog