Yaideliz Acevedo can vividly recall sitting in her doctor’s office with her one-month-old baby in his stroller, when her doctor said, “You have rheumatoid arthritis.” She was just 21 years old, and didn’t really know what that meant. Unfortunately, her primary care provider didn’t take the time to explain it to her.
It wasn’t until she saw a rheumatologist for the first time that she realized RA was a big deal. Though he left the room before she could ask any questions about her condition. She was left without any guidance or support, so she made the choice to forgo the medication he prescribed, hoping that her condition would go away on its own. However, things got worse, to the point where she couldn’t take care of herself, let alone her son.
Yaideliz was motivated to seek answers and take charge of her health. She began researching on her own, finding articles and personal stories on CreakyJoints.org and CreakyJoints Espanol that inspired her to take more control over her diagnosis. She connected with a new rheumatologist, who not only took her concerns seriously but also took the time to address her questions. For the first time, she felt heard. The rheumatologist stressed the importance of following the treatment plan, marking a significant turning point and sparking a desire to become proactive in her health care.
Finding Her Voice
Now, five years later, Yaideliz is proudly presenting her poster “Finding Gratitude in Adversity: The Impact of Finding the Right Rheumatologist” at the 2023 American College of Rheumatology (ACR) Convergence in San Diego, California.
Through CreakyJoints, she discovered patient advocacy opportunities and ArthritisPower, a patient-centered research registry now called PatientSpot.
Inspired to be a voice for others facing similar challenges, she embraced the chance to advocate for the rheumatoid arthritis (RA) community. Yaideliz became a Patient Governor with the Global Healthy Living Foundation to represent the needs of other patients and to take part in discussions about research.
By fostering a closer relationship with her doctor, she gained better control over her flares and realized that a fulfilling life with this disease was possible. Lifestyle changes and the insights she gained from her experiences allowed her to manage her RA effectively.
With more control over her health, Yaideliz can now take care of her child while pursing her career as a certified medical assistant at a cancer facility and master’s degree in psychology.
Representing Other Patients at a National Conference
Here, we talk with Yaideliz about her experience submitting a patient poster for ACR and what she hopes others will take away from her learnings.
CJ: Tell us about your poster.
Yaideliz: “It’s a tool I wish I had when I was first diagnosed. I wish someone could have guided me and let me know that it’s ok not to feel ok. I found my voice. It’s the reason why I reached out to learn about my diagnosis.”
CJ: Why was this topic important to you?
Yaideliz: “I want others to know they’re not alone. There are resources. I felt like I wasn’t heard because I was so young. It’s important to find your voice. Just because a doctor is a professional, it doesn’t mean they are the right professional for you.”
CJ: Why is it important to showcase this poster at a forum like ACR?
Yaideliz: “To the rheumatologists out there: Listen to your patient. You are there for your patients. One patient is not the same as the next. Each patient is different. Some doctors are not used to seeing patients so young. It’s important for doctors to make their patients feel like they have a voice in their care.”
CJ: What are you most looking forward to at ACR?
Yaideliz: “I’m looking forward to hearing and reading about other patients’ stories and being part of meeting new people, socializing. Seeing it come to life is very exciting.”
Key Takeaways to Gain More Control of Your Health
Yaideliz has advice for anyone newly diagnosed — and especially younger — who feel their doctor may not be the best match.
- Don’t let your age define your disease. In the first few months, Yaideliz was in denial. She believed she would recover on her own at 21. However, her condition worsened, almost leading to hospitalization due to delayed treatment.
- Advocate for yourself. “The decisions about your treatment plan should be made with your doctor, not by your doctor.”
- Ask questions. If you feel like something is not settling right at the doctor, ask questions. “When I was first diagnosed, I was made to feel like only the doctor had the knowledge and I didn’t know anything,” says Yaideliz.
- Don’t be afraid to change your doctor. “You can find someone who works for you,” she says.
Be a More Proactive Patient with ArthritisPower
PatientSpot (formerly ArthritisPower) is a patient-led, patient-centered research registry for people living with chronic conditions. You can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.
Acevedo Y. Finding Gratitude in Adversity: The Impact of Finding the Right Rheumatologist [abstract]. Arthritis & Rheumatology Journal. 2023. https://acrabstracts.org/abstract/finding-gratitude-in-adversity-the-impact-of-finding-the-right-rheumatologist/.