Jaclyn has spent years navigating complex medical conditions and has learned the importance of advocating for herself and building trust with her healthcare team. Through both the highs and lows of her journey, Jaclyn has relied on the support of her outpatient healthcare team while also navigating the challenges of hospital care. Her story highlights the power of honest communication, proactive care, and gratitude for physicians who truly listen and understand.
Continue reading more to learn about Jaclyn's journey with complex medical care and how she found strength in advocating for herself.
Trusting My Healthcare Team
Navigating complex health issues is never easy, but over time, I have learned to trust my outpatient healthcare team. Some of my doctors have been with me through both the best and the worst moments of my health journey. While my outpatient team has been a lifeline, my experiences in the hospital have not always been as supportive. In fact, at times, I have faced dismissiveness and a lack of understanding from hospital staff, making the journey even more challenging.
The Challenges of Hospital Care
In the hospital, it can be difficult to find help for complex medical issues, especially when healthcare providers don’t understand how to manage them. This lack of knowledge often results in more harm than good, as doctors can be dismissive of my symptoms and struggles. I’ve often been told to just push through my symptoms, with little to no effort from inpatient healthcare teams to help or even try to understand what I’m going through.
When this happens, I’ve reached out to my outpatient healthcare team for support, and they have been instrumental in communicating with the hospital staff on my behalf. While this can sometimes be helpful, there are still times when healthcare providers refuse to consider my perspective, my family’s, or my outpatient team's input. It can be incredibly frustrating when doctors are certain they are right, despite the input of everyone else involved in my care.
Advice for Navigating Healthcare
Over time, I’ve learned the importance of being proactive in my healthcare. One of the most helpful things I’ve done is track my symptoms and write down any questions I have before my appointments. It has also been critical to be honest about how my symptoms impact my daily life. In the past, I would downplay how bad I was feeling, but I’ve found that when I explain just how debilitating my symptoms are, my doctors are better able to understand my situation and offer appropriate care.
Being honest with myself has been just as important as being honest with my doctors. I’ve had to stop minimizing my symptoms and accept that things are often much worse than I initially admit. Waiting too long to ask for help has often resulted in more complications, so now, I try to reach out sooner rather than later.
A Heartfelt Thanks to a Physician Who Listens
I am incredibly grateful to one of my physicians who has made a lasting impact on my health journey. She has always been responsive to my questions, often answering messages herself, and most importantly, she listens. Her approach to my care has been life-changing. She stays up-to-date on my rare disease and takes the time to really understand my needs, which has made all the difference. I would be lost without her expertise and support, and I am beyond thankful for the life she’s helped me build, even through the most difficult times.
Leave a comment (all fields required)