Lupus Didn't Walk Gently Into My Life

Lupus didn't walk gently into my life.

It stormed into my life, rearranging everything. Not just my health. Everything. There was another version of me before lupus. A version I desperately want back. The me who didn't have to calculate energy like currency. The me who could say yes without hesitation. The me would could work hard, clean the house, take care of the children, run errands, cook, and make plans all in the same day. Then lupus joined the chat. A battle that never clocks out. Since then, every decision has a price tag. An energy price tag, a "what will it cost me later" price tag, a "can I really afford this" price tag. If I go out to dinner tonight, will I be in bed for two days? I'm so exhausted - if I push too hard, will I trigger a flare? If I clean the kitchen, will I have enough strength left to take a shower? I feel like I live in negotiations with my own body. I seem to be losing most of them lately. Time has changed. Energy has changed. Limitations have changed. Even the way I think has changed. Plans are "maybe" now. Commitments are "I'll try." Spontaneity is a painful memory. The hardest part? There are days that I grieve my old life. I lost a lot of pieces of my identity. I lost a lot of my independence. I lost a lot of my security. My dreams postponed or quietly buried. Frustrated. Angry. Sad. Lupus just didn't make me sick. It reshaped my entire world, including the person I used to be. It changed how long I can stand. How far I can walk. How much energy I have. It dictates most of my days. I cancel. I apologize. I feel guilty. I feel misunderstood. I feel like a burden. It touches my body, my mind, my relationships, my finances, my future. And some days, the grief of that is overwhelming. I feel like the fire I used to have, the independence, the "me" is being held captive under the weight of this disease. Living with lupus means rebuilding my life around limitations I never saw coming. But, that adjustment happens again whenever my health takes another hit and I lose more abilities. I have to find courage on days I can barely lift my head. Now, I have to redefine what a good day means. I have to redefine productivity and success for myself. If lupus has rearranged your life, you're not weak when you grieve it - You are human. I know we can't stay in that mindset. Keep fighting. Keep loving. Keep trying. It's okay to rest. It's okay to grieve sometimes. But, don't quit! Keep Flying, Lupus Warriors! ~The Lupus Warriors Community~

10 Things People with Lupus Wish Others Understood 

Living with lupus is more than just not feeling well. It’s a daily, often invisible battle with a chronic illness. Here are some things many lupus warriors wish others truly understood:

 We don’t “look sick” — but we are.
Lupus is invisible most of the time. Just because we look okay doesn’t mean we feel okay. You can't see organ damage, joint pain, nerve pain, exhaustion, and many other issues we deal with daily.

 The fatigue is not normal tiredness.
It’s bone-deep exhaustion that sleep and rest doesn’t fix. It can feel like the flu, jet lag, and sleep deprivation combined.

 Pain levels change day to day.
Joints, muscles, nerves — what hurts today may be different tomorrow.

 We cancel plans because we have to — not because we want to.
Flare-ups are unpredictable. We hate missing out on things. It is very frustrating for us to not be able to do what we want to do.

 Good days don’t mean we’re cured.
Having a better day, doesn't mean we are well.

 Stress can make us sick.
Stress is a trigger for a lot of lupus warriors and can cause flares.

 Brain fog is real.
Memory slips, trouble concentrating, and word-finding issues are part of lupus for many of us.

 Medications can be as hard as the illness.
Side effects, immune suppression, weight changes, mood shifts can be just a few of the issues from medications.

 We grieve our old energy, abilities, and life.
There’s a real emotional toll in adjusting to limits we never asked for or saw coming.

 Support means understanding, not fixing.
We don’t need comparisons, or supplement/lifestyle suggestions — we have doctors. We need patience, flexibility, and for the people in our lives to believe us.

 If you know someone with lupus: believe them, support them, and show a little grace with what you cannot see. We need people to be there in our lives. We don't need you to fix it, because it cannot be fixed. We just need some understanding from the ones we love.

~The Lupus Warriors Community ~
 

Invisible

I have often heard lupus referred to as an invisible illness. 
After a recent doctor's appointment ...

Invisible

Invisible
I have often heard Lupus referred to as an "invisible illness." People call it that because you cannot see its wreckage just by looking at a person. For some, there are outward markers—the tell-tale malar rash—but even those do not begin to scratch the surface of what Lupus does to a life.

That isn't the "invisible" on my mind today. There are deeper layers to this —aspects that feel like more than just an "invisible" disease. I feel like an invisible person.

How often have you felt your own voice fade as you sit before a doctor, trying to find words for the inexplicable? How many of us have felt ourselves turn transparent even in the eyes of friends and family?

The Chart
I am not a person sitting in front of you. I am a chart. I am a stack of papers to be flipped through; a series of numbers and cold text scrolling across a computer screen.

During my last visit, I watched your frustration flicker across your face. You stared at the screen. I was right there, sitting in the chair, but you didn't see me. You saw your numbers. I don't think you ever made eye contact.

"Okay, I'll see you in three months," you said.

But, hold on. You didn't see me today.

Invisible.

You didn’t see the desperate hope hanging in the air. You didn’t see that hope snap and crumble when I saw the irritation on your face. If you are irritated or frustrated — guess what? You get to walk out the door. You are finished with your frustrating moment. You simply move on to the next chart in the stack. I don't get that freedom to walk away from this. I am living with it every single second of the day, and I came here today hoping for help.

Invisible.

I walk out the door and break down into tears on the drive home. I go back to a life defined by pain, confusion, and a steady, agonizing loss of independence. You leave the room and leave the frustration behind. I cannot leave this.

Now, I am left wondering: How do I continue to live like this, day after day? With no answers. With no help. And after seeing that look in your eyes — with no hope for change.

Invisible.

What the data misses
What your chart doesn't show
Is everything you actually need to know. To actually hear.
If it was you, how would you feel?
If it was someone you loved, would you listen to what they needed to say?

It doesn't show the nights spent crying as the pain wraps itself around me, threading through my joints, muscles, and nerves. It doesn't show me curled up alone with a Ziploc bag of ice, begging God to ease the pain - for a moment’s peace. I fall asleep with tears drying on my cheeks and my brow still knitted in a grimace — not because the pain has subsided, but because I am simply too exhausted and spent. I wake ten minutes later, or thirty. Sometimes mercifully "wonderful" nights, I might get a few solid hours uninterrupted.

The nights I sleep a full night through are ghosts now. They are rare and forgotten.

Every day is spent mostly in solitude. The pain and the mind-numbing, consuming fatigue keep me from a life that even resembles "living." The exhaustion is so total that I struggle to even pay attention when I finally find myself in the company of others.

Invisible.

What your chart doesn't tell you: I have given up on the idea of a doctor actually helping me.

I have retreated into a world of "coping." I choose my companions from a screen or a page — my phone, my laptop, a book, a show—while I wait out the hours. Even a bath is a marathon. I have to lie on the bed to recover in the space between washing and getting dressed. I have help to pick out my clothes and brush my hair. I am profoundly thankful for that help — but it shouldn't be this way.

Invisible.

I hurt. This pain is real. But, the pain isn't even the worst part of this battle. It’s the "sick exhaustion" that settles into my muscles, my bones, my very mind. It steals pieces of my life that I cannot begin to explain to someone who hasn't stood where I stand.

Invisible.

Data on a screen.
Numbers on a hard drive.
The visit ends. The chart is returned to the stack with a multitude of others.
I return home.

Silent.
What changed today?
You turned your back.
You went on with your day.
I lost hope.

Invisible.

How many, or maybe I should ask how often, have you felt invisible as you sit in front of a doctor and try to explain what is happening to you? How many have felt invisible even to their friends and family?