At the age of 27, Geri Rodriguez began experiencing joint pain. At first, she wrote it off as a side effect of nearing her thirties. But then the joint pain continued to progress.
“I couldn’t open doors anymore, I couldn’t do my makeup, I couldn’t write. So, I went to my primary care doctor and shared all of my symptoms, but she just brushed it off,” Geri said. “She said I was young, so I just needed to take some Tylenol and exercise. I was thinking she’s a doctor, she knows best, so I followed her instructions, but it never got better.”
Geri began experiencing chest pains, shortness of breath, and swelling in her legs and feet. She returned to her primary care doctor, hoping that some visible symptoms would help get the tests she needed.After a few weeks of tests, including rounds of bloodwork and ultrasounds, Geri was diagnosed with lupus nephritis.
“I think I’m one of the lucky ones because it only took months for me to get a diagnosis. I’ve heard from others that it took years for them to be diagnosed with lupus,” she said. “So I think I got really lucky, and I think that living in New York City, with so many doctors at my fingertips, helped as well. Still, it took having visible symptoms for doctors to start testing.”
As much as Geri felt grateful to know the cause behind her symptoms, this was still a life changing diagnosis.
“I remember crying in the doctor’s office. The doctor was stone cold as she delivered the news because, I guess, they do this kind of thing all the time. But I was bawling my eyes out,” she said. “Afterwards, I was sort of in denial. I knew that something was wrong with me, but I wanted it to have a quick fix, not to be something with me forever. So I went to two other rheumatologists and had them run the tests again.”
As Geri began taking medication for lupus nephritis, she found that the swelling and joint pain decreased significantly. In order to maintain that, however, she had to cut alcohol out of her diet, limit fast food and sugar, and ultimately adjust to living as an immunocompromised person. It also meant that she had to change some of her long term plans.
“In the beginning, I was just thinking day-to-day. I just wanted that pain to lessen,” she said.“But I eventually realized that, on these medications, I can’t get pregnant. SoI got engaged, I got married, and my plans of having a family were put to a halt.And career-wise, I want to climb up the ladder in my field, but I’m afraid of what all of that stress could do to my health. Lupus is totally unpredictable.”
Even as the years have passed, Geri continues to feel like she’s at a bit of a standstill.
“With lupus, everything is always going to be unpredictable. It’s been seven years since my diagnosis, and I’ve also been diagnosed with Sjögren's as well as Non-Hodgkin’s lymphoma, so I never know exactly what’s going to happen,” she said. “But my family, friends, my then-boyfriend who is now my husband – they’ve been with me through it all. I always have someone that I can call on.”
Health-wise, Geri continues to be on the so-called ‘wait and watch protocol.’ Her care today is less about uncovering a new diagnosis and more about long-term symptom management. This, of course, doesn’t mean that the emotional rollercoaster of living with chronic illnesses has suddenly ended.
“After being diagnosed with lupus in 2017, I reached a point of acceptance. But once I got hit with Sjögren's and Non-Hodgkin’s lymphoma, I felt like I had to start all over again,” she said. “It really is a rollercoaster and the chronic illness grief just really doesn’t end. But I do have to give so much thanks to my support system – without them being there for me, I don’t know if I would have made it to where I am now.”
Each of these experiences ultimately led Geri to begin sharing her lupus journey on social media. It’s an effort, in large part, to provide a more supportive community to people who may not have that support in their day-to-day lives.
“Before all of this, I didn’t know anyone personally with lupus or any other autoimmune disease. So we were all a bit perplexed and had to turn to the internet to learn about LupusNephritis. I tried to find personal accounts of living with the condition, but there just wasn’t much out there,” she said. “I set out to find people who really know what I’m going through, and I built my Instagram page to be a place for others to find the same.”
Despite initially setting out to help others,Geri’s also learned a lot for herself.
“I’ve learned so much more from other patients than from doctors. Doctors know what they read in textbooks. But I’ve learned from patients about what they’re really going through with lupus, with other chronic illnesses. It’s been a game changer,” she said. “I would’ve been so lost twenty years ago, without the internet, without social media, without all of that support.”
In addition to maintaining her Instagram page and participating in online support groups, Geri writes educational articles for Lupus.net that pull from her own lived experiences.
“I think one of the things that drives me is that a lot of people don’t realize how important it is to advocate for yourself in your medical care,” she said. “People think you can go to any doctor and get the help that you know that you need – but that is not always the case.”
Now age 34, Geri is hopeful that the future holds less medical gaslighting and more comprehensive support for people living with chronic illnesses.
“I think the number one thing that medical professionals can do is believe in their patients. We are not textbooks; we are real people with different experiences, and we deserve to be listened to compassionately,” she said. “I think that kindness can go a long way when people are going a little bit crazy trying to figure out what’s going on in their own body. Doctors just need to listen.”
