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.
Photo by Mitchell Hollander on Unsplash
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.
Photo by Žygimantas Dukauskas on Unsplash
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?
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.
Photo by Tammy Gann on Unsplash
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.
Photo by Tuce
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.
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.
I so understand! Something I struggle with myself... Sometimes it's the unknowns... Other times the never ending being tired... Not being able to get out of bed or sleeping ur days away and people wander "why is she lazy"... Never knowing when im gonna be choked from the inflammation deep in my throat... The never ending pain that comes... Some wonder how I got to the point in my life b4 of being dependent on pain meds and this is part of that reason... I no longer take anything for pain besides tylenol because of my dependency and NSAIDs had caused internal bleeding in my stomach... My life is a journey and none of us knows what tomorrow will bring for sure. For mine I know a certain amount of fear and hope comes. I hate that other people, as well as myself, who suffer with this horrible disease and hope and pray to make it through each day. I also ask that people not judge each other for noone really knows what each other goes through behind closed doors... Thank you and God bless
Misti Hawkins
2021-04-08
This is so true. As I am continuing to come to terms with the fact that I have Lupus, Hashingmotos & RA; I find myself feeling as if I am living two lives. The hidden one and the life I fight to maintain for those that observe me in my outside life. I am constantly studying different approaches to treating my symptoms, from exercising to food that reduces inflammation. All while knowing it is truly a catch 22, bc exercising will lead to a increase in pain, but inactivity causes pain and will have negative impact on my overall health. I get so tired, frustrated and angry bc I used to be able to do so much. My body feels 20yrs older than it actually is & it is hard to maintain positive attitude. This article just really hit home with all the different emotions and experiences I feel and go through too much of the time. I appreciate the moment to vent in your comment section. Thank you for once again expressing so well how life with Lupus truly impacts your life, inside and out.S
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