Life With Lupus: Fear

TJ Wolf

Life With Lupus: Fear

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Quite an experience to live in fear isn't it? That's what it is to be a slave.

- the late Rutger Hauer as Nexus-6 Android Roy Baty in the 1982 film Blade Runner

A bit melodramatic for this article?

Maybe.

But that's truly how it feels to live with Lupus and its many comorbidities.

You are a slave to Lupus and it tries to control your life.

Hence what many with Lupus say to find strength and fight back, "I have Lupus, but Lupus doesn't have me".

A brave mantra and a good one, yet it easily gets lost in the fears those of with Lupus face everyday.

Fears not only in our minds. Fears that also manifest themselves in pain and fatigue.

Fear

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If you or someone you know has Lupus, the following definitions and synonyms for fear will undoubtedly resonate with you.

fear (noun): an unpleasant emotion caused by the belief that someone or something is dangerous, likely to cause pain, or a threats

fear (verb):be afraid of (someone or something) as likely to be dangerous, painful, or threatening.

  • (fear for) feel anxiety or apprehension on behalf of.
  • avoid or put off doing something because one is afraid.

Synonyms:

  • terror
  • fright
  • fearfulness
  • alarm
  • panic
  • agitation
  • trepidation
  • dread
  • consternation
  • dismay
  • distress
  • anxiety
  • worry
  • angst
  • unease
  • uneasiness
  • apprehension
  • apprehensiveness
  • nervousness
  • nerves
  • discomposure
  • unrest
  • foreboding
  • misgiving
  • doubt
  • worriment
  • phobia
  • aversion
  • antipathy
  • neurosis
  • complex
  • mania
  • obsessive fear

Source: Bing search Powered by Oxford Dictionaries

It is fear that is at the heart of so much behind what those with Lupus deal with each day.
We fear...
  • Pain
  • Fatigue
  • Tomorrow
  • Death

...to name a few.

Fear Pain

The fear of pain is something we all can equate to.

Sure, some will say "I don't fear pain" like a tough Hollywood action film character, but indulge me please.

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When your body has targeted your own organs and tissues for destruction and is killing them from inside of you, it causes pain from where you never imagined pain could come from. It sounds so unreal, you would think it was the torture plot of a science fiction book or movie.

For example, think of this combination the next time you think pain is an exaggeration or a trifle. I've personally experienced the following combination recently with my own Lupus.

  • Burning and bleeding deep inside your abdomen
  • Burning and inability to swallow
  • Feeling of being hit in the chest with a fastball
  • Feeling of hot burning nails hammered into the joints of your knees, hips, ankles, shoulders, and fingers. The nails dig deeper into your bones with each movement
  • Twisted ankle in all directions, massive swelling with acid poured on it, even a sock or sheet on your foot causes pain
  • Feeling of sharp and venom like burning out of no where in the hands, feet, back, head, and legs.

You might call that torture.

I called it a "Tuesday" dealing with...

  • Colitis of the large intestine
  • Gastritis of the esophagus and stomach
  • Costochondritis of the left ribs and breast bone
  • Osteo-Arthritis with inflammation of the joints
  • Gouty Arthritis of the ankle and foot
  • Small fiber neuropathy

The fear of pain is ever present for us. Lupus does not exactly warn you when or how you will experience pain. Sometimes you know you are about to feel pain with a movement or step. Other times pain comes and wakes you from deep sleep at night when your body is fairly immobile or in the midst of the day doing the simplest of tasks. You feel this constant fear and being on edge not knowing what pain comes next nor when current pain will be alleviated.

Sure we take medications to help with the pain, but most of mine either work a short time or sporadically. SometimesI get a quick refresher on just how intense the pain can get if I forget to take my medications.

Fear Fatigue

Fear fatigue?

Yes.

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I personally fear fatigue. Like pain, it can easily ruin your dreams, goals, and plans each day.

Fatigue wears on you both mentally and physically.

What if you woke tomorrow and felt so tired and fatigued that you could not even get up to shower or dress?

So tired you collapse back into your bed as though you were drugged?

Would that scare you and cause fear about what was happening to you?

Ever have Pneumonia and not be able to walk from one room to another? Or get out of bed?

What if that happens to you randomly for the rest of your life regardless of treatments or amount of rest?
That's what Lupus does.
Lupus has no interest in how much rest I've had, what my plans and goals are in life, nor how many spoons I have per day. Lupus triggers an immune battle at the cellular level for unknown reasons on any or all days, and takes those with Lupus along for the ride. The ride usually involves profound fatigue coupled with pain.
It actually creates a paradox of fear and worry on your good days about when the fatigue and pain are coming back with a vengeance. Hard to shake the fear when something never goes away. Lupus is never cured, it simply waits to strike again.

Fear Tomorrow

These fears of pain and fatigue can easily compound into a fear of what tomorrow, or the next day, or the next day after that will bring.

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Personally, the most disappointing part of my days is when I awake from a lucid dream where I was doing something without pain or fatigue. It might be playing sports, running, cycling, completing physical work or tasks, and many times the dream is remembrance of something I did in my youth. When I awake and feel pain and/or fatigue again, I am immediately overwhelmed with a let down of disappointment and discouragement that reality has returned.

For many of us with Lupus, the fear of what tomorrow brings is ever present.

Yes, tomorrow may bring new treatments or a cure, and we remain hopeful for that of course.

But with something like Lupus, we must also keep in mind the Stockdale Paradox.

From Jim Collin's book "Good To Great", I learned about the "Stockdale Paradox". Although Collins and Stockdale were discussing Stockdale's time as a prisoner of war, I believe this is an important concept and mindset that can also be applied to battling chronic incurable disease.

From Jim Collins' "Good To Great" and a related Harvard Business School article, some excerpts about the "Stockdale Paradox"...

Collins asked him about the personal characteristics of prisoners who did not make it out of the camps. “The optimists,” he replied. “Oh, they were the ones who said, ‘We’re going to be out by Christmas.’ And Christmas would come, and Christmas would go. Then they’d say, ‘We’re going to be out by Easter.’ And Easter would come, and Easter would go. And then Thanksgiving, and then it would be Christmas again. And they died of a broken heart … This is a very important lesson. You must never confuse faith that you will prevail in the end—which you can never afford to lose—with the discipline to confront the most brutal facts of your current reality, whatever they might be."

“I lived on a day-to-day basis. … [M]ost guys thought it was really better for everybody to be an optimist. I wasn't naturally that way;...I think there was a lot of damage done by optimists; other writers from other wars share that opinion. The problem is, some people believe what professional optimists are passing out and come unglued when their predictions don't work out.”

Fear Death

As discussed above with the "Stockdale Paradox", the mindset is to maintain the faith you will prevail, but never overlook the reality of the current situation.

For many Lupus, it is very, very hard to overlook the reality of the current situation daily.

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And we fear death as a result.

We see, hear, and read all the statistics about Lupus mortality. We know life expectancy has improved with different degress of Lupus over the years. We are also mindful of how our mortality tables compare to others without Lupus.

We fear not knowing what is in store for us or when.

With each new pain, comorbidity, and/or flare, the fear of...

  • "is this it?"
  • "is this the beginning of the end?"
  • "should I go to the ER?"

Happens to me frequently.

Examples...

  • Costochondritis manifested itself at first as sever chest pain - heart attack or heart inflammation? Off to the ER.
  • Gouty arthritis - a simple one time purines imbalance? or the warning sign of kidney disease?
  • Could my next TIA be a full blown stroke?
  • What if the next time I lose my balance out of no where it happens on stairs or a ladder?
  • What if dysphagia from gastritis causes me to choke on my food?

Sure everyone worries that chest pain can be a warning sign for heart attack.

But the fear can be greater when you've already been warned by physicians that you are at extreme high risk due to anti-phospholipid antibodies.

For those with Lupus, each day can bring new sources of unknown symptoms and severe pain. And the fear of death can be constant from not knowing what is causing what, or how severe or benign the cause is.

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About The Author

I have the deadly disease known as Lupus. The version of Lupus I have is the most common, Systemic Lupus Erythematosus (SLE). True to its name, SLE is a systemic condition throughout the body. In addition, I have Lupus Anti-Coagulant and Lupus Anti-Phospholipid which causes my Lupus to impact my blood.

So What Exactly Is Lupus?

In short and perhaps unscientific terms, SLE is my own immune system betraying me and deciding to wage war upon various systems in my body. My immune system incorrectly targets these systems as enemies and marks them as invaders. Then it targets my cells, tissues, and organs in those systems for destruction. This destruction begins with inflammation and its other biochemical weapons and agents to kill cells and shutdown organs. My Lupus likes to focus on vanquishing its own perceived axis of evil in the form of my circulatory, nervous, digestive, and musculoskeletal systems.

The Wolf Within Me

Lupus is currently not curable. My Rheumatologist uses the analogy that my immune system is a wild animal that we attempt to keep caged in remission with powerful and yet toxic medications. So of course given its “Lupus”, I associate a wolf as the wild animal within me. Frequently the caged wolf is still able to take a swipe at me from within the bars of cage. And many times the wolf breaks free to wreak havoc on me until medications are increased or added to suppress it again. These events occur despite me taking all my medications daily as instructed. My wolf has its own plans for me it seems. And surprisingly enough, those plans may include me becoming a better person.

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My primary mission is to spread awareness about the disease Systemic Lupus Erythematosus (SLE) and many of its comorbidities. Given most physical activities cause me pain nowadays, I've taken on writing as a new hobby, form of therapy, and method to interact with others. You will find I also experiment with articles related to business and careers.

Atlanta, GA
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