Nancy Enriquez-Ryan, Living with Lupus

woman with lupus in photo with daughterGetting diagnosed with lupus was a life-altering event for Nancy Enriquez-Ryan.

Not to be defeated by the disease, she drew inspiration from it, earned her Master’s degree in counseling and is currently working on her doctorate in psychology with an emphasis on health psychology, so she can help others.

“It’s incredibly frustrating to have this disease, but now I feel that somehow it was meant for me  to help other people,” said Nancy.

Her dissertation examines an integrative model for lupus, looking at managing the disease from a neuropsychological perspective.

“Lupus is a systemic disease and I wanted to investigate how the physical and psychological aspects interact to affect patient’s lives,” Nancy said.

She drew from her own experiences because initially no one took her physical symptoms seriously. Instead, she was told that situational stress was likely the cause of her symptoms. At the time, her husband was deployed to Iraq and she was working and attending school full-time.  Although stress was certainly relevant, she knew that it did not explain all of what she was feeling. The severe fatigue, pain in her joints and frequent illnesses were something more than stress. When she started to develop a rash on her face, Nancy suspected she had lupus.

“I did a lot of my own research. Once the rash developed I printed out the page about lupus and took it to the doctor’s office. The funny thing is that the nurse practitioner had begun to suspect the same thing and greeted me with some information about lupus,” Nancy said.

Upon getting diagnosed at 32, her first thought was, “OK. I”m not crazy,” Nancy said. “Then I was a scared.”

She experienced what many with lupus go through, experimenting with an array of medications; hospital stays for infections; and limited mobility because of joint pain.

“It’s not surprising that people go through a sequence of emotions,” Nancy said. “When life as you know it changes; you are taking medications that affect your body, you can’t move as much as you used to, and you’re dealing with daily chronic pain each day. That’s going to impact your emotional well being.”

Shortly after being formally diagnosed Nancy’s husband returned from Iraq and they were transferred to a new duty station. “I thought, ‘No. This will not ruin my life,’” she said
Nancy took time to reflect on the impact of the diagnosis.

“I knew there had to be a way to continue helping people just in a different capacity, “ Nancy said. She got busy, enrolling in school, volunteering with the Red Cross and getting involved in the local chapter of the lupus foundation.

Nancy and her husband had hoped to start family but were told that it would a risk or even impossible due to the disease. She knew it may be difficult, and may be impossible. She planned to wait until the disease was under control, but found herself pregnant earlier than she’d planned. Nancy made the tough decision to stop taking her lupus medications so that her baby would not suffer any harmful effects from them.

Pregnancy was tough on Nancy, “it was horribly uncomfortable,” she said. She was in and out of the hospital and suffered through chronic pain. Fortunately Nancy delivered her healthy daughter Izabella.

“She’s such a blessing, definitely motivation for me to keep going. On those days that I’m exhausted, I look at her energy level and it gives me that extra spark that I need,” she said.
Izabella seems pleased with her mom’s energy level. “My mommy plays hide and go seek with me and we hunt for butterflies,” she said.

Nancy’s learned that there are some days she needs to slow down. Take a break, and take care of herself, which does not come naturally to this driven woman. She makes it a priority to go for walks, get massages and swimming during the summer.

“I have to remind myself not to get overly stressed. Stress can really impact your immune system in a negative way” she said.

Also, she says, she’s learned to ask for help. “It’s hard, but you need to do it,” she said. When she needs help, she turns to her husband, family and friends. “Mostly it has been my husband because military life has kept us living across the country from family. He is always there when I need him and an excellent father.”

Nancy also recommends getting informed and learning as much as you can about the disease, visiting a doctor you are comfortable with and trust. Also, make sure you advocate for yourself. At the end of the day, it all about your health and wellness. If your need are not being met then get some help or find a resource that can help you, she said.

“Most importantly, you need to maintain a positive attitude,” she said. “Somehow this ended up being a source of inspiration for me. Now I know what my calling is, I turned this life-altering experience into something positive to help other people.”