What Lupus Feels Like – Part 1

What Lupus Feels Like – Part 1

I thought I'd start a blog series about what lupus actually feels like. It's such an intricate little shit of a disease. There are so many symptoms, so many ways it shows itself, and no two people experience it exactly the same. Sometimes it's hard to believe one disease can cause everything it does.

First of all, lupus is an autoimmune disease. Instead of protecting you from infections, your immune system mistakenly attacks your own healthy tissues. Imagine that. The body that's supposed to be your homie isn't trying to kill you per se... it's just committed to making your life incredibly miserable.

Symptoms can include swollen, painful joints and tendons, kidney, brain, and other organ damage caused by both the disease and, sometimes, the medications used to treat it. It can also affect your skin. Rashes can appear on your face, scalp, arms, legs—basically anywhere there is, well... skin.

Other symptoms include fatigue, diarrhea, nausea, vision problems, brain fog, and the list honestly goes on and on. My first symptom that made me stop and think, "Something isn't right," was inflammation.

At the ripe old age of 20, I started noticing my hands would swell to the point that there was no space between my fingers. The skin would become tight and shiny, stretched so much that pale patches appeared where it was under the most pressure.

At first it only happened when I got overheated or spent a long time walking. Then it started happening first thing in the morning. Eventually my ankles joined the rebellion, and the swelling became so painful that walking normally became difficult.

By my early twenties I also noticed I'd wake up feeling completely exhausted and sick. I could barely get up to use the bathroom, let alone go to work. I knew something was seriously wrong when my besties would call to go out and I had absolutely zero interest in getting dressed or functioning like a normal human being. That's just not who I was.

I've always been an overachiever, thanks in part to my childhood. I constantly chased the satisfaction that came with a job well done. Being a natural people pleaser, it didn't matter what the task was as long as the people I looked up to smiled with appreciation when I finished it. It's a smidge because of childhood trauma too... but we'll unpack that little gem another day.

Eventually I landed my first "big girl" job and discovered the magical world of health insurance. I got myself a referral to a rheumatologist, and my autoimmune journey officially began.

I should mention something here that anyone living with autoimmune disease will understand.

My blood work has generally shown positive ANA results and other markers suggesting autoimmune disease. I feel guilty and blessed saying that because I've met and read about so many people who suffer just as much as I do, yet their blood work doesn't give doctors the evidence they need. My heart breaks for them.

This disease is a biotch. It doesn't discriminate. Sometimes it likes to gaslight you, but the gas is real. You feel like you're on fire, and nobody seems interested in helping put you out.

After what felt like a never-ending list of tests, I was diagnosed with Connective Tissue Disorder. I was prescribed several medications and told we'd monitor things.

That was about it.

Then life happened... or as the kids say, I started hearing the saxophones.

I changed jobs, lost my insurance, and somehow, by the grace of God, I actually started feeling better. My body was still young enough that maybe the short time I spent on medication calmed things down. I started my new job, cared for my ailing mother, and even met the man who would become my husband.

For most of my mid-to-late twenties, I was relatively symptom-free. The symptoms only showed up when I overdid things. They call that a flare, for those unfamiliar with autoimmune lingo.

Yes... I feel cool saying that.

That break from illness was nice.

Short...

...but nice.

Then came Wren in her thirties.

Happily married.

Two beautiful daughters.

Running her own business.

Stress at an all-time high.

BAM.

The symptoms slowly came creeping back.

Only this time...

No insurance.

Every doctor's appointment felt the same.

"You're too fat."

"It's just the summer heat."

"You're retaining water."

Or my personal favorite...

"It's just anxiety causing physical symptoms."

After enough appointments, you start wondering if maybe they're right. You begin questioning your own body more than the doctors do.

By my late thirties, I could barely walk. Pain became an everyday companion. The brain fog worsened. The fatigue became overwhelming.

Finally, thanks to the Health Insurance Marketplace, I got coverage again and scheduled an appointment with a primary care physician who turned out to be an absolute Godsend.

She listened.

She ordered the right tests.

She took me seriously.

And by the grace of all that's holy, she referred me to the rheumatologist I still see today.

By my second year with this incredible team, we'd finally found a combination of medications that worked. For the first time in my life, I felt validated. All those strange, disconnected symptoms I'd been living with finally had names.

Multiple names, actually.

Lupus.

Sjögren's syndrome.

Raynaud's syndrome.

Inflammatory arthritis.

Now here's the mushy part.

Reading that probably sounds very matter-of-fact, but living it wasn't.

The pain was overwhelming.

I lost my business because I couldn't work consistently anymore. Financial stress piled on top of physical pain, anxiety, and uncertainty.

It took twenty years to receive those diagnoses.

The relief of finally having answers was overwhelming... but it was quickly followed by the realization that these illnesses aren't curable.

Everyone's autoimmune journey is different, but everyone deserves doctors who listen, nurses who care, and people who believe them.

It's taken me a long time to write that sentence and actually believe it myself.

Living with autoimmune disease has a funny way of making you feel like a fraud.

Because unless you've lived it—or loved someone who has—it can seem impossible that one person could have so many symptoms with no obvious explanation.

Your immune system literally believes you are the enemy.

It's absurd.

I always picture that thing we all did to our siblings growing up. You grab their wrist and make them smack themselves over and over while yelling,

"Why are you hitting yourself?"

That's lupus.

Except instead of your sibling grabbing your hand, it's your immune system grabbing your own tissues and ripping them apart.

Go figure.

So if you're reading this and any of it sounds familiar, start with a good primary care physician.

Take someone with you to your appointments if you can. Having another set of ears is invaluable when you're processing a mountain of information. They can also help remember symptoms you've forgotten or advocate for you when you're too exhausted to do it yourself.

Be firm.

Be respectful.

Don't give up.

Your goal is to get that golden ticket to a rheumatologist.

Then find a damn good rheumatologist.

Once you do, document everything.

Your symptoms.

Your medications.

Your lab work.

Your flare-ups.

Your questions.

Keep your appointments, even when you're having a good month. Sometimes the pattern matters just as much as the symptoms themselves.

The diagnosis is the goal.

Once doctors know what they're treating, they can finally start helping you effectively.

Today, I'm writing this from a place I wasn't sure I'd ever reach.

I still have symptoms.

I still have bad days.

But I have doctors who believe me.

Medications that help me.

And, maybe most importantly...

Peace of mind.

Peace doesn't always mean living without pain.

Sometimes peace is simply knowing that when something changes, you have a team that believes you. You have a plan. You have hope.

Twenty years ago, I didn't have that.

Today, I do.

And if you're still searching for your answers, don't give up.

They're worth fighting for.

Do it for peace.