A Lupus Story: How Disease Affects One Woman’s Identity

Photo Credit: Erica Adams Photography

In honor of the annual Walk for Lupus Now fundraising event, hosted by the Lupus Foundation of America, I wanted to introduce my readers to one of my dear friends, Jamie.  We’ve been friends for nearly two decades, since our freshman year of high school. In 2010, she was diagnosed with Lupus and was forever changed. This is a story of her disease; this is her Lupus story and I am honored to be sharing it with my readers.

Since the years of her diagnosis, her friends and family have watched Jamie change as she struggled to come to terms with her lupus story. Being diagnosed with Lupus impacted her identity, and as you will hear later, as a woman and a mother. In addition to the actual disease, Jamie is combating society’s complete ignorance to what Lupus is and how it alters almost everything of the person you once were.

Jamie and several of our friends have formed a team called Screw Loop! and are walking this coming Saturday, September 29th in Los Angeles, California, to give hope to those affected by lupus, find better treatments, and above else, to find a cure. Since I’m not able to be there in person, I wanted to do my part in showing a dear friend the support she deserves in fighting this little known disease. So, here it is…

A Lupus Story

Hi, J! What do you hope to accomplish by telling your story to DSM readers? 
Thanks, Ness! Obviously, I want to tell your readers about the Walk For Lupus Now event and how they can donate to the Screw Loop! team. But, even if we don’t raise a single penny, I hope that someone reading this learns a little bit about Lupus and how it affects those of us who have it. There is such a stigma because of the symptoms associated with Lupus, and people don’t really understand what we go through.

It is Lupus? 
Lupus is an autoimmune disorder where a person’s immune system works against you. It attacks the organs, joints and skin. In most cases organ damage is irreversible. Symptoms include SEVERE fatigue, swollen, painful joints, skin issues ranging from a red butterfly shaped rash in the nose and cheeks to, in my case, blisters. Pain is the most universal symptom for lupus sufferers. For each person, symptoms differ slightly but everyone is plagued with pain and fatigue. It can destroy your body. Personally, when I’m in a flare up, my skin is covered in red scaly blisters and my joints lock up like the tin man. On bad days I can’t make it upstairs or even brush my hair because my fingers hurt so bad.

Photo credit: Erica Adams Photography

What was it like receiving the Lupus diagnosis?
It took over a year to get my diagnosis. The ordeal started in January of 2010, when I found it hard to get out of bed in the mornings. I went to my primary doctor complaining that I was having difficulty keeping up with my four kids and having significant pain in my ribs, elbows and fingers. Her first response was, “well, you’re turning 30 soon and four kids is a lot for anyone to handle.” I was insulted and insisted on blood testing. A few weeks passed and I got a call to come back in 3 months for more blood work.

So, I went to another doctor.

Twelve months, one surgery to remove my gall bladder and a false diagnosis of Lymphoma later, my husband I were sitting in a cancer center waiting for a diagnosis when we were told I had Systemic Lupus Erythromatosis. In a sense, we were relieved that I didn’t have cancer, but it wasn’t long before the reality set in that my life would never be the same. The following year is still a blur. I went through a very deep depression and too many pity parties to count. One of the hardest things to deal with was that most people had not heard of lupus and if they had, they certainly didn’t understand it.

Photo credit: Erica Adams Photography

How has lupus affected your identity as a woman and mom?
It has been almost 3 years of sickness. December will mark the two year anniversary of my diagnosis. I have only just recently accepted that I am still the same mom, wife, daughter and friend I used to be. Only now I require A LOT more rest and medication. Previously, Lupus had shattered my identity as a woman and mother. One of the most difficult issues I have had to deal with was facing menopause at 31 years old. I was surprised at the level of devastation I faced when told that Lupus had attacked my ovaries. After my last daughter was born I had a tubal ligation, so I was shocked to be dealing with such grief. But the idea that I could no longer bare children was almost too much for me to deal with. I no longer felt like a woman. In truth, I’m still struggling with that. I didn’t even tell my husband for over a month due to the humiliation I felt. The affects of Lupus on my life are always there, and constantly changing. Each year brings new challenges, but at least today I feel like myself again.

Why is the Walk For Lupus Now event so important to you?
If this walk brings awareness of the struggles that the men and women with this disease have to go through, then I am in full support! One of the most difficult aspects of this disease is trying to explain why you look fine on the outside, but are in too much pain to get out of bed. Sometimes just explaining that is to much if a task in its self. Lupus is very hard to diagnose and very hard to understand, as it looks different in every case. If we keep raising awareness, maybe in our lifetime lupus will be easily diagnosed and recognized before irreversible, life threatening organ damage is done. We’ve already made so much progress! Up until about 15 years ago, this was a death sentence. Now, thanks to the funds raised by events like Walk For Lupus Now, Lupus doesn’t have to be a death sentence. 

To find out more about Lupus, visit Lupus Foundation of America. To donate to the Screw Loop! team, visit their fundraising page. To keep Jamie’s message going, consider sharing this post or write your own Lupus Story! If you do, please share it with me and Jamie, because as my friend so perfectly expressed, raising awareness is the most profound impact we can have on improving the affects of this disease.

Love you, J! You are amazing. Thanks for letting me be a itty bitty part of your healing process.