A girl sits on a turtle, connected to an IV infusion, pointing hastily forward.

Sitting Waiting: Lupus Lessons Learned

Last updated: October 2022

I sat silent as I sat at my infusion, waiting for the drips to be complete. All I heard were my thoughts and the ticking clock. My thoughts are screaming, "why do I have to do this?" Then, the next moment, my mind says, "this is keeping you alive." For 3 hours, I sat with conflicted thoughts of anger and gratitude.

Time stands still for no one

As I hear the clock tick the time down, I am faced with so many feelings. Will lupus be the death of me? What will I do if this medicine stops working? How can I live a life filled with purpose in a state of fear of my mortality? Tick tock, tick tock, the time is ticking, and I'm in a place in my mind that has created a myriad of cynical thoughts.

Dealing with cynicism

The hustle and bustle of the hospital and infusion room bring me out of that cynical place. Doctors walking through, in the distance, hearing patients being called back, and the cars moving outside the window all bring me back to reality. The nurse asked a question about how I was feeling to help me straighten my crown. Actually, I was doing fine, and stating that to her pushed my mind to gratitude. Grateful for modern medicine that helps keep my lupus in check. Even more grateful for my state of mind, to see every angle so I don't get overwhelmed with sadness and depression.

Most times on this lupus journey, I am sitting and waiting. Whether at the doctor's or in everyday life, waiting on a cure. It becomes a task that puts everything in perspective for me.

Lessons learned

Although this life with lupus can be very tiring, exhausting, and difficult to bear, it has taught me some important lessons:

  1. Patience – I have had to exhibit patience with my body, mind and soul. Without it, I believe I would go crazy in my thoughts.
  2. Thankfulness – It has taken a lot of time for me to be thankful for my journey. I'm just learning how to be grateful for my now. The journey itself has been rough, but I'm thankful for the things that help me along.
  3. Strength – Beyond anything that lupus has put me through, I have found strength. I have had some really tough times but have survived all of them.
  4. Happiness – The most important thing I have learned through my pain is to be happy in spite of. Despite all of the issues, I found the importance of being happy in the small moments of relief.

In summary, we know lupus is a difficult disease to handle. It's important to recognize when you feel down about it and deal with those feelings. It's equally important to focus on those moments that can feel good and give such mindful lessons. This helps in my lupus journey daily.

My pain is real, and so is my hope. It brings such hope to my walk. Realizing that there is more to this lupus journey than my pain makes a world of difference in how I fight. What lessons have you learned from dealing with lupus issues? Let me know in the comments.

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