Category Archives: Invisible Illness

Living a Fabulous Life with Lupus (#HAWMC 26)

“No matter what the disease has thrown my way, I have never lost sight of my dream to have a fabulous life.” Katina Rae Stapleton

This week, I am coming into the homestretch of the Health Activists Writer’s Month Challenge. I am excited that I was able to blog every day (with the exception of a post that went live after midnight). Today’s HAWMC topic is close to my heart:

“Today you are challenged with the task of writing a tagline. This can be for your blog, your health condition or for yourself.”

Since I already have a tagline for the Butterfly Lessons blog, this assignment was super easy . . .

Living a Fabulous Life with Lupus

I picked “fabulousness” as the theme of my blog, because I hate low expectations. I refuse to believe that a lupus diagnosis must lead to a sad, dreary, lonely, painful life. I have a full life and know many fellow lupus butterflies who are overcoming obstacles to pursue their hopes and dreams. Many of them I have “met” online:

There is Christine Miserandino, who came up the idea of using spoons to describe living with lupus. Her website But You Don’t Look Sick is an oasis for spoonies who live with chronic illnesses and invisible disabilities. You can find her on Twitter as @bydls.

I am also inspired by these super fabulous “tweeps” and fellow lupus bloggers:

Before you leave Butterfly Lessons today, check out the Blogroll for links to other lupus bloggers and organizations who are trying to make life better for those of us living with lupus (one day at a time).

Take care & be fabulous,

Katina Rae Stapleton

P.S. To learn more about how the blog Butterfly Lessons: Living a Fabulous Life with Lupus came about, read “About Katina Rae Stapleton.”


Top 5 Reasons I Write About Lupus (Day 4 of #HAWMC)

Today’s prompt was: “I write about my health because… Reflect on why you write about your health for 15-20 minutes without stopping.”

So without further ado, here are the Top 5 Reasons I Write About Lupus

#5     Even though House is always mentioning lupus, it is a disease that not enough people know about.

#4     I have always loved to write and find it very rewarding to write about a subject I know a lot about.

#3     Telling my story lets me give others a glimpse into what life is like for someone who has an invisible chronic illness.

#2     Writing about lupus allows me to be part of a wonderful community of health activists, lupus warriors, and spoonies online.

#1     Inspiring others brings me great joy. If one of my blog posts helps even one person with lupus live a more fabulous life, I will consider my words a success.

Take Care,

Katina Rae Stapleton

Am I too invisible for accessible seating?

The Backstory:

Last year I wrote a blog post called “I need a do-over” about the perils I face when I have to stand on the commuter train all the way to work. My commuter train has double-decker cars with about ten seats on each end that don’t require going up or down stairs. The “no-stairs” seating area can be used by anyone, but is supposed to be prioritized for  people with special needs. 

The Wheelchair/Cane Guy Incident:

Sometimes my legs feel perfectly fine and I can stand all the way into DC, about a 35 minute ride.* But if I am having a lupus or fibromyalgia flare, my legs sometimes feel like someone has hit them with a car. On those days I really need a seat.

One day last week I got on the train with my legs feeling a hot mess. So I took my own advice and sat in the first available seat, which happened to be in the accessible seating area. I rode the train happily until we reached the second-to-last stop where someone in a wheelchair was being helped on the train by the conductor.

The person seated next to me got up so that the wheelchair could be moved into our two-seat row, but nobody else moved an inch. I didn’t move either, because I was waiting to see where the conductor wanted to place the chair. It could go in the 4-person section I was sitting in or the 4-person section across the aisle.

Right across from the aisle from me (also in a wheelchair accessible seat) was a guy who walks with a cane. “Cane Guy” started waving at me to get up and move even though 1) the wheelchair could have just as easily replaced Cane Guy’s seat as mine, and 2) the woman in the wheelchair was still being helped onto the train. Cane Guy just kept waving at me and I started to feel uncomfortable, like I had done something wrong. Finally, I did something I immediately regretted. Instead of holding my ground, I got up, walked up the flight of stairs, and found another seat. 

It was very surreal for me because I give up my seat all the time for people with wheelchairs when I am feeling well. But that day my leg hurt and I felt a wave of disgruntlement, especially towards Cane Guy. As I limped up the stairs, I thought to myself: “My leg hurts! Bad! Why did I have to move? I have just as much of a right to sit on the ground floor as you do, Cane Guy! Does your leg hurt as much as mine?!?.”

I got even more upset when I realized that not only was Cane Guy still sitting in the accessible seating area, so were four other people who could have moved instead of me. 

I have never felt more invisibly ill than I did at that moment.

To Cane Guy and my other seatmates, I probably looked like a perfectly healthy person who should have been willing to give up her seat without question. After all, I did not have a health challenge that they could easily see.

At the moment I gave up my seat, I couldn’t think of what else to do besides refuse to move and create a scene.After all, the woman’s wheelchair did have to go somewhere, and my seat was one of the two best options (Cane Guy’s seat was the other).

What was I supposed to say? “Excuse me, I may look healthy (and fabulous), but I am really an invisibly ill person who is having trouble standing and navigating stairs.  Can one of you move instead?” Well, actually, that is what I should have said, but I didn’t think of it until I had already moved and was mad, mad, mad about it.

As I stewed in my seat, I decided while it was too late to say something to Cane Guy, it wasn’t too late to say something to the conductor. So when I got off the train, I waited to speak to the conductor and told her I had felt pressured by Cane Guy to give up the seat I really needed. She was actually quite kind, but noted that there was no visible signal (like a wheelchair or a cane) to indicate that I also needed the accessible seating. While I agreed with her in principle, I wondered if this could have all been avoided if there was some way that I could indicate being “physically challenged” without having to tell my entire health history on a public train. While I love blogging about living with Lupus, I have no desire to tell my fellow commuters about it just for an accessible seat!

I finally came up with a future option that strikes the balance of providing information without over-sharing. If someone asks me to move for a wheelchair and I am not up to it that day, I will simply say: “Can someone on this level switch seats with me? I don’t mind moving for the wheelchair, but because I have a disability I also need a ground-level seat.”

Has something like this ever happened to you? What did you do? What do you think I should do in the future if I face a “wheelchair vs. my seat” dilemma?

Take Care,

Katina Rae Stapleton

* The irony is that Lupus and Fibromyalgia are so fickle that sometimes my legs are so painful that I can barely walk and other times my legs are strong enough for me to dance the night away. By this weekend my flare had passed and I was able to go to a party and dance for much of the night. Go figure . . . .