Please Don't Simplify the Complexities
When you don't understand sick people, 10 things about lupus life and trauma recovery, always sick, shocking doggies, and theology of suffering
In some of my previous roles, I’d find myself pastoring and leading people who I just didn’t get. Especially those who were ill or afraid of illness. I wanted to care and give grace, I really did. But I had no context or understanding for how chronic illness can transform a life, let alone what the day-to-day experiences were for someone who was sick. I didn’t have the patience or need to learn.
A rant on being judgmental:
Let’s pause for a moment and address whatever feelings might have come up in you as you read that above paragraph with some words of grace.
I don’t judge myself for not being “better” that way in that season. If you’re in the same boat I was, I hope that you don’t judge yourself too harshly either.
I was busy learning other things, such as how to advocate and fight for what is right (like I mentioned in the last article), or figuring out healthy boundaries and discovering my identity. We’re all in different seasons. We don’t need to make ourselves out as “better” because we’ve figured out something another hasn’t, nor do we need to exhaust ourselves with to-do-lists on how to be “better” that are written based on our self-judgments. Both pride and self-judgment keep us from living authentically and keep us from accepting others where they are.
Personally, I’ve seen that if we pursue Life’s Source and love others, we become people of compassion and empathy. (Even if it wasn’t our strength to start out with.) This is something we “get to do,” a privilege we can grow in, not a “should do” we must add to our list.
*Rant concluded*
Moving on, then…
Suffering’s gain
There are many things I am grateful to have gained through sickness, and compassion and empathy for those suffering and struggling with their health are high on that list.
If a blanket of meaning could be laid out over the last year-and-a-half, I would be tempted to declare, “this is why Elisa got sick.” But traumatic circumstances should never be so simplified, for meaning cannot be distilled into one box, one story, or one soundbite.
After the last post, Waves, Breakers and Red Helicopters, I promised you another post on living with lupus these days. Why? As I said previously, I hope those of you with chronic illness or struggling with your mental health might feel less alone. Also, for those of you who were like I used to be, wanting to care and have compassion, but having no understanding.
Ten things about life with lupus and trauma recovery
Last month, I intentionally reflected on how lupus and medical trauma still affects me now, a little over a year and a half since I was first diagnosed. Although I am on remission’s path and not actively flaring—gratefully—my life has still changed. This isn’t just in how I was formed through that season, but also in how I live today.
Many of these things aren’t particularly huge or small. They just are. They’re my current waves that I’m learning to traverse to get past the breakers. I hope they give you a peak into having autoimmune disease, chronic illness or poor mental health (at least the way I’ve experienced these). Maybe these will expand your views on some complex topics.
I realized putting these all together is overwhelmingly long. After a lot of internal debate, I decided to make this a ten day mini-essay that you can choose to look at if you are interested in the title, or share if relevant. The exception of this first one, for this post is not short. This is an experiment of course, sending something to you daily. It makes me anxious because I never want to spam people and value your presence here at Authentically Elisa. Just know that if you hate it, I promise, there will be an end (and if no one reads them I’ll know to not do this again).
Without further ado, here is the first essay on the way my life looks these days with lupus while I recover from trauma:
1. Wellness is inconsistent at best, which makes planning stressful.
Sometimes I think I am forever unwell. After all, I was sick half of February through May (not an exaggeration). Nothing major (besides the appendicitis), but just fighting whichever bug my kids bring home. I should “get to” wear a mask with people. And I try—an eighth of the time.
My doctor keeps reminding me I am on immunosuppressants, “Elisa, you need to be careful.” But three years of being COVID careful + lupus careful still didn’t equal a habit. I clamor to rip off the red tape, skirt the boundaries, and slather bright paint on my face—FOR FREEDOM!
Instead I defiantly don’t wear the mask. That is, until I am sitting in my 3rd grader’s classroom. Then I fumble around my pockets, searching for my mask, trying to not panic about the sticky germs I’m inhaling.
I do wonder if my frequent malaise is the lupus monster herself, like a mini-flare here and there. I’ll be fatigued, have aching joints, a sore throat, a headache. I usually have these multiple days a week and I don’t even consider that weird. I forgot what “normal” feels like; my standard for feeling “good” has lowered drastically.
Even though my hands hurt through the night, the pain isn’t what wears me down the most. The most challenging part is never knowing if I am going to be sick and how that affects my relationships and involvement in anything outside the home. I worry that if I am contagious I’ll pass it on. Or that I’ll be too unwell to participate. I need people and purpose outside my home!
Overall, I wonder if I can genuinely make plans and am always counting the cost. It doesn’t help that I greatly dislike being cancelled on and hate it when I have to do that to others.
This whole thing becomes a constant battle with anxiety. I feel a lot of stress about making plans or not making plans. There is a lot of shame tied into this as well. Will it upset someone else or their plans to depend on me? Will it be worse if I don’t try? A sense of failure washes over me when I was better than I expected, and didn’t go—or worse than expected and I must let someone down. Sometimes it can be so frustrating that I just give up on trying to do anything for a few weeks.
Don’t shock the doggies
There was a research study done years ago about inconsistencies like this, in which dogs were shocked. How they responded depended on how they had the power to respond. You can read it here, but in a nutshell, dogs that couldn’t ensure they wouldn’t be harmed became passive and upset. We don’t consider it nice or ethical to shock doggies these days, but this study became a baseline on a phenomenon we now call learned helplessness.
When our experiences always seem to throw a wrench in our lives, we begin believing in walls and limits that don’t necessarily exist. At best, we try to move forward wobbling, because we don’t know if there is anything to stand on. At worse, we don’t even try because it doesn’t occur to us there is even a possibility. Trauma is a cruel, but effective teacher.
People (and apparently canines) are extremely shaped by whether they perceive they have agency. This isn’t just isn’t about what they do or don’t do externally—it is also internal. No surprise here, depression and other mental illnesses are often a byproduct of limited or lack of choice.
I guess it makes sense why I feel the way I do.
Theology of suffering
If you are reading this and are usually healthy, I hope this causes you to become more aware of the privilege you have to make plans and to get involved in anything that requires commitment. Maybe you now have a little more understanding for the feelings your unwell friends might be emoting.
I already mentioned that developing empathy is something I like that I’ve gained, but that isn’t the only type of understanding we need. For those of us who are people of faith, we also need to be equipped with an understanding of theology as it relates to suffering.
It is easy to state that challenging circumstances are good because they push us to God. Friends, family, and spiritual leaders often use platitudes to simplify the complex. They are a coping mechanism, used to disengage from a conversation and not dig deeper. This leaves the one suffering not only having to grapple with their difficult circumstances on their own, but also to process their hard questions, feelings, and doubt alone.
Simplifying suffering is a major shut down if you desire authentic relationships.
For me, coming to terms with having systemic lupus was totally overshadowed by my worldview that had to process suffering in the context of my faith. Actually, I am not sure they can even be separated—developing a theology of suffering was how I came to terms with my reality. I felt extremely lonely though a large part of my sickness, and it wasn’t because I was always by myself. It was because I had so few people with whom I felt I could talk about these things.
We who are sick do not have the privilege of having a shallow theology of suffering. Especially if our faith is to survive (even if our bodies don’t). Living it day after day, week after week, month after month, and year after year isn’t a choice. Suffering deeply forms us. It is only a matter of which way we will become formed.
Our formation in suffering largely depends on what we have access to, such as our spiritual community’s engagement or our ability to connect with God on our own. To be deeply formed in a hopeful, life-giving way requires extreme intention, a lot of support, and continually receiving miraculous grace to push through.
So if it is your desire to grow in support of those walking through a difficult situation, please accept its depth and complexity. Wonderfully, seeking to understand others in their unique situations will also form you, helping you become someone you will be glad to become. That’s what it is for all of us, right? We are all on this journey of becoming.
Read the rest of this series:
Please Don't Simplify the Complexities (Mini-Essay #1)
Pharmacy (Mini-Essay #2)
PTSD Et Al. (Mini-Essay #3)
Not-So-Friendly Insomnia (Mini-Essay #4)
Phantom Pain (Mini-Essay #5)
Hello, Hair! (Mini-Essay #6)
Homebody (Mini-Essay #7)
The Scars (Mini-Essay #8)
Betrayal (Mini-Essay #9)
Grief for a Lost Year (Mini-Essay #10)
On Average Advocate this week: How Do You Honor a Story?
Follow me on Instagram @AuthenticallyElisa
Read the first post in this series here, or other lupus/trauma related posts:
House of Life, Washing Hands, and the Lupus, Pregnancy, and Autoimmune Illness series posted at AverageAdvocate.com.