This article is not intended to be medical advice.
The article is simply my own story and experiences as someone with Systemic Lupus Erythematosus (SLE).
As always, you should consult medical professionals with regard to your own health and decisions.
Life With Lupus: Relating to Others
Relating to others is tough.
If you have Lupus, as I do, your life has changed forever.
You may not feel like you once were.
You may no longer feel like the person you were a week, a month, a year, or years ago.
You may never be the person you once were, ever again.
You don't know what is yet to come.
And you struggle to relate to others who are not affected.
Their lives and goals keep rolling forward.
Our lives are sometimes at a standstill at the intersection of fear and mortality.
And our goals can be to get out of bed and make it through the day.
Goals that seem ridiculous to others who cannot comprehend our situation.
Why Don't They Understand?
True understanding and empathy from others remain aloof.
And I'm convinced they may never understand unless they experience it for themselves.
It's not the fault of anyone of course.
No more than someone with Lupus is at fault for not truly understanding what someone with another illness goes through, whether that illness is moderate or severe in comparison.
Nor do we want others we know subjected to it.
Many simply cannot comprehend that receiving treatment does not always equate to improvement or recovery.
It's hard to understand that damage is already done within our bodies. Treatment is to prevent further damage and extend mortality.
At this time, the damage done to our insides cannot be reversed. And in extreme circumstances, organ or joint replacements must be utilized.
Many of us were conditioned at a young age to think that we go to the doctor, receive treatment or medication, and most of the time never need to go back for that issue.
"Here you go, fill this prescription, should be fine in a couple of weeks. Call the office if you need anything" is the interaction that many people expect with doctors.
For us it can be seeing a Rheumatologist every 3 months for the rest of our lives, with at least annual visits to multiple specialists, not to mention frequent hospital visits and urgent care.
Comparison of yourself to others is always a losing game.
And I believe losing the game hurts more when the deck is stacked against you before you even start.
This is the mental trap I catch myself falling into constantly.
The world continues to fly past me while I feel in slow motion.
I still want to be and do things in life.
I want to do the things I see others doing or experiencing. I still aspire to be them or share their goals.
But the more I accept I can no longer be or do these things, the more I avoid the trap of depression and hopelessness.
I personally need to keep the mindset that there are other new goals and aspirations of value I can do for myself, my family, and the world.
My example: instead of continuing to worry over...
- colleagues discussing their weekend bike rides, hikes, and "boot camp" classes
- how I was once in military shape
- how I was once in road cyclist shape
...I need to let the comparisons to past memories and future aspirations go.
Focus on what I can do, even if a minimal amount of exercise, and channel what energy or spoons I have remaining to a new powerful endeavor that consumes less of my limited pain tolerance and energy, such as writing.
To cope, we must find new ventures and outlets that bring us focus distraction, a sense of accomplishment, and a feeling of reward.
So we must divert our focus away from such worries. Worries that do nothing but deplete our precious reserves of energy each day. Leave those worries to people with endless energy and spoon supplies to bounce back with. We must take care of ourselves.
When you find the right people who understand, empathize, and support you...and you will...be sure to appreciate them and not take them for granted.
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 the inflammation and its other biochemical weapons and agents to kill cells and shut down 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 a 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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