This is a guest post by LupusChick contributor, Emily Carroll, sharing her opinion of how her life would change if a cure was suddenly found for her lupus.
We hear the word “cure” often, as we bring awareness to various illnesses. Curing a disease is the end goal for all diseases. To live in a world where disease no longer exists and we can all never endure lifelong chronic illnesses or fear a disease coming back would be heavenly. Those of us with Lupus wouldn’t have to wake up every morning feeling like we need to squirt oil on our joints like the Tin Man, see the bright red malar rash on our face, get stuck with needles, or have our organs attacked and need hospitalization.
I recently received a call from my rheumatologist that some of my routine blood work was coming back abnormal again. Over the past couple of years, things had been quiet in relation to abnormal blood work results which is great, after years of organ involvement. This change got me thinking, have you ever thought about the life adjustments you would have to make if a “cure” for Lupus became possible?
Personally, I find it exciting but also terrifying and exhausting.
One of the major impacts Lupus has had on my life has included career changes. Like many other Spoonies, it became impossible for me to keep up with the structured 40-60 work weeks, especially when they require prolonged periods of standing and working long shifts. The importance of finding a manger who understood the unpredictability and trusted my judgment was deemed an impossible task.
I was forced to reroute my career goals on a practical level, and getting creative to find a second passion that I was excited about each morning. The unpredictability of Lupus requires flexibility so I could work when I could and rest when Lupus demanded it. Readjusting my mindset to let go of one goal I’d held onto for so long took years of self-reflection and introspection for me to fully accept and not become angry over.
As I was learning when to accept what I needed to accept in order to feel better or stay stable I had to make peace with the “hurry up and wait” mindset. We spend so much time signing in, filling out wellness surveys, going over new symptoms, waiting again for the doctors to get to us, in addition to struggling with the ability to find genuine and reliable friends who would be with me through absolutely anything.
Going through the friendship breakups and emotional letdowns of this process challenged my emotional resiliency. Not everyone is able to handle the repetitive ups and downs, the need to cancel a social occasion last minute or genuinely believe that your invisible illness is real and you don’t have to look sick on the outside to be suffering on the inside. When this happens time and time again, it can feel utterly exhausting and defeating but it is the new norm Lupus has introduced and something I have learned to let go of quite easily without feeling bad for letting others down. That would no longer be an issue, but I fear struggling with no limits would be more difficult than just cutting the chord. It’d be more years of readjustment after we spent years overcoming the adversities of chronic illness.
On a macro-level, I have had to redefine who I am and where I wanted to be in five, ten, fifteen years. How does having Lupus fit into who I am and will I allow it to define me or would I use it to fuel my new ambitions and goals? After finally accepting that I need to rest when my body has had enough and my spoon arsenal is empty, I would be able to take on the world without having to think ahead of what else I need to save energy for. The lessons are learned and my character has been strengthened and those qualities can be used going forth into the new life of no chronic pain or struggle.
Being a Lupie brings out a strength that can be seen as a rarity in today’s world, but after years of readjusting all of these expectations for myself, I can’t help but wonder what if my mentality doesn’t snap back to knowing I can physically achieve anything and I end up appearing lazy because I am so use to having to rest and take a step back?
It would be quite the adjustment to many of us who have struggled and continuously pivoted our lives. Those years of teaching myself not to overpack my schedule or stop feeling guilty about canceling can disappear. I have finally embraced Lupus as being a part of me and my story so much so that I would miss the unique angle it has given my story. This may sound odd to some so I ask, how would you handle being cured of Lupus?
I’d love to hear your take on this topic in the comments below!