Why It Took Me 3 Years to Write About My Lupus Diagnosis

Three years. 

I am a writer by nature.  However, in three years, I have not written about my lupus diagnosis. When I was first diagnosed, I wanted to be able to pour out my feelings on paper and tell others about lupus to raise awareness for an underfunded disease. I wanted people to understand living with lupus. I wanted to talk about my diagnosis and what it was like to hear the words, “I think it’s lupus” while I held my 5-year-old on my lap in a doctor’s office. I wanted writing to help me process all that was thrown at me so quickly.  I kept waiting for a stopping point though. A point in which I had enough stability in my disease to be able to say, “This is what has happened, and this is the resolution to it.” But there really isn’t a resolution. 

Because lupus changes all the time. My health changes all the time. I’m always waiting on a lab result. Or a referral to the next doctor. A new test they want to run. A new medicine to try. There isn’t a stopping point at which to catch my breath and say, “Here it is… I can tell my story now.” So, I finally stopped waiting and started writing. I am one of 5 million people living with lupus. 

Three years ago, a tiny spot popped up on my forehead after a family trip to Destin, Florida. It was just a flaky little thing, the size of a pencil eraser, that turned slightly pink after I touched it. Just a small spot in the middle of my forehead. It looked innocent enough, so I squashed the voice that said, “Something is not right.” For a year before, I had dealt with numerous infections, shingles, hair loss, fatigue and a variety of other strange symptoms. My primary care doctor had run some basic tests and didn’t really uncover anything significant. I decided I was a tired mother. After all, with three kids, who wouldn’t be tired? But then this tiny spot popped up, and it made me uneasy. Surely this wasn’t all related? 

After a few weeks, the spot hadn’t gotten any better, so I decided to make an appointment with a dermatologist. Maybe this was the beginning of skin cancer. My heart skipped a beat out of fear. I loved the sun and the beach, the pool and being outside all the time. I was probably paying the price for years worth of sun damage. I went in the morning of my appointment, prepared to hear a lecture on sunscreen and hats, and praying that would be the worst of it. I met the nicest dermatologist, who did give me a lecture but was so sweet about it that I didn’t mind. She also froze off what she thought was a precancerous lesion on my forehead. I felt like I had dodged a bullet and promised I would pay heed to the skin cancer warning. I made a follow-up appointment for six weeks later, bought a bunch of hats and sunscreen and wore a bandaid over the middle of my forehead as it healed. 

But it didn’t heal. Over the course of the next few weeks, it seemed to turn more and more pink. I also began waking up with joint pain, especially in my ankles. My fatigue increased, and I was feeling very run down. I knew something wasn’t right. It wasn’t until I looked at a picture of my forehead, from before my first appointment, that I realized the spot had grown exponentially. It was over twice the size from where it had started out and now looked like it was moving up into my hairline. I called the dermatologist’s office immediately and told them I needed to be seen. They got me in as soon as possible. I remember telling my husband the night before my appointment that I had a feeling this wasn’t going to be something easy to fix. 

As I left for my afternoon appointment, my 5-year-old began to cry and begged to come with me. I had planned for her to stay with my older children but didn’t want to leave them with a cranky kid, so I loaded her up in the van with me instead. As we were shown into the office, the nurse took a quick history and looked at my spot. Shortly after, my dermatologist came in. She took one look and said, “We need to take a biopsy of this.” 

I remember feeling panicked and saying my biggest fear out loud, “Do you think it’s skin cancer?” 

“No,” she replied. “This might be something more longterm than that.” 

I asked her what the biopsy was for exactly, and she told me she was looking for lupus and scleroderma. And then she told me not to Google anything. Well sure… who would ever do that? I started my Google search in the parking lot 15 minutes later. 

As they laid me down to do the punch biopsy, my 5-year-old was crying. She didn’t know what they were doing to me, and I’m sure she could sense the serious tone in the room. They held my head back and punched out a piece of the spot. I bled from the biopsy, and they put two stitches in my forehead. My daughter watched the whole thing, scared about what was happening to me. To say that I had just been blindsided by all of this was an understatement. I suddenly had stitches in my forehead, I was trying to process all the words coming at me about possible treatments and medications, formulate all the questions I knew I would come up with as soon as I left the office, squelch the panic rising in my throat, and oh my goodness… do not cry here. But my youngest needed my attention, and that was my first priority. I’m so glad I had something else on which to direct my focus. I managed to keep it together. 

Over the next few days, the Google searches were numerous. I earned my doctorate in Recognizing Lupus Symptoms. And after my research, I knew the biopsy would confirm that diagnosis. Everything matched up symptom-wise. And three days after the biopsy, I had my answer.

“Your biopsy came back positive for discoid lupus. We need you to make an appointment to discuss treatment and the next steps.” 

Those words set in motion a completely new life for me. Lab work, referrals to new doctors, high-dose steroids for months on end, plaquenil, chemotherapy, more lab work that turned up more questions than answers, a hospital stay from an infection that left me couch bound and sick for weeks afterward, more diagnoses for other autoimmune conditions. And to add insult to injury? I have to completely avoid the sun. It can cause lupus flares. There is no swimming with my kids in the middle of a summer day. No more beach vacations. Instead, there are long-sleeve sunscreen shirts during hot soccer tournaments, and UV umbrellas always packed in my car.     

There are neuropathy gloves and ice packs for when my hands get too much sun. There is always the worry I will feel bad and have to cancel plans and disappoint someone. There is a complete turn around from what my life used to be. I cannot even remember what it felt like to be so carefree that summer week in Destin. 

What. Just. Happened. Here? 

I felt like Dorothy in “The Wizard of Oz.” One moment everything was normal, and the next, I was thrown into a completely unfamiliar land. Three years after diagnosis, and you would think that I’ve gotten my bearings. That I would be more familiar with the terrain of this new territory. You would be wrong though. Ask any lupus patient and they can tell you that the only constant with lupus is that nothing ever stays the same. As one issue resolves (or not…), another one pops up and you work on treating it.  

That is living with lupus. Waiting to write until I have the end of my story is just not possible. Life goes on. I have important things to do. I am a wife, a mother, a daughter, a teacher and a friend. I am living my story every day. 

And now is the time to write it. 

I am one of 5 million.