Why I'm Finally Sharing This Photo From My Lupus Treatment

This is a self-portrait I took in April of 2011, just after the height of the treatments I underwent for a lupus flare that left me paralyzed.

woman during lupus treatment with tape on her chest and a tattoo on her shoulder

I was sweaty and exhausted. I had just gotten the plasmapheresis port that had been in my chest for nearly a month taken out. My face was puffy, swollen and broken out from months of being on a very high dose of steroids. Additionally, I was receiving a chemotherapy infusion once a month.

Because I was doing so many things to knock down my immune system, I was incredibly susceptible to infections and caught shingles during this time – probably from the hospital.

It feels good to share it now because it shows how far I have come since this time in my life – both emotionally and physically. It also feels good to show what lupus can look like, because for such a common disease it is woefully misunderstood.

I think chronic illnesses need to be represented and talked about more so people realize this is someone they know, whether that person talks about it or not.

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Lupus

woman hiking a mountain with her husband and dog

Why I Struggled for Years to Accept My Lupus Diagnosis

From the time I was little, I would brag about my badass immune system. I was the healthiest kid ever minus a few kid bouts of strep. When I got sick I knew something wasn’t right. I’ll take you back to 2002 when I was 15 and it became imperative I get “in shape.” Maybe it was peer [...]
An upset looking female, drawn.

5 Reasons Your Loved One Might Get Upset With Your Medical Advice

So, someone you love has an invisible chronic disease, you recommended a certain tea, supplement, exercise, or treatment, and your loved one got angry. Why? You meant well. You care deeply. Does this person not want to get better? Has this person become bitter? Is your loved one being duped by doctors? No, no, no. [...]
doctor speaking with patient

Why I Ended a 6-Year Relationship With My Rheumatologist

The phone rang twice. A feeling of dejection resonated as I held the phone to my ear. This wasn’t the only time they made my life more complicated than it has to be. Tears welled up in my eyes as I hung up the phone, shaking in frustration. It’s the first rheumatologist I’ve broken up [...]
A woman with orange hair, illustrated.

What I Learned Within One Year of My First Lupus Flare

One year ago today was the last day I felt “normal.” The last day that I remember not having anxiety over pain. The last day I remember waking up with out swelling or stiffness. The last day I had energy and felt like I could just be myself. The last day before lupus took over [...]