During college, I discovered a concerning bump between my clavicle and heart, measuring four inches long and one inch wide. Worried, I showed it to my mother, a registered nurse, suspecting it could be a tumor.
Seeking medical attention, I visited a doctor who suggested it might be a dislocated rib and ordered x-rays. However, the results were inconclusive, leaving me with an unexplained and persistent bump.
Over the years, I consulted several more doctors, each presenting varying theories but unable to provide a definitive diagnosis. The associated pain fluctuated, and I diligently noted factors that seemed to aggravate it, such as push-ups, seatbelt pressure, carrying heavy bags, and alcohol consumption.
Navigating the healthcare system to find answers proved exhausting. Scheduling appointments, obtaining referrals, undergoing tests, and consulting various providers unfamiliar with my medical history took months or even years. This process is even more challenging for individuals without insurance, financial stability, or adequate support to advocate for their needs.
Unfortunately, many people suffer from undiagnosed, misdiagnosed, or unaddressed medical issues due to various barriers, such as lack of insurance, financial constraints, time constraints, and limited knowledge or comfort level in communicating with healthcare providers. Some may encounter unsupportive doctors or avoid medical attention due to COVID-19 concerns. And others, like me, may have the resources but still struggle to obtain a diagnosis.
Securing a diagnosis is often not straightforward or effortless. It involves a combination of testing, clinical reasoning, and a substantial investment of time, money, and patience, with no guarantee of a conclusive answer.
Carissa Hodgson, a licensed clinical social worker and oncology social worker-certified, highlights the isolating experience many individuals face when their doctors cannot provide a definitive diagnosis. This lack of validation and clarity can lead to heightened frustration and confusion.
While some health concerns may resolve on their own, others can develop into lifelong conditions that significantly impact quality of life.
If you find yourself struggling with an undiagnosed medical condition or ineffective interventions, Hodgson recommends seeking the support of an advocate, whether a medical expert, a loved one, or a social worker. Having a support system can help you persist in your search for answers when initially told that there are none.
Remember, you are not alone in this journey. Trust your instincts. If you feel something is amiss, believe in your intuition.
As you embark on the path to finding answers, prioritize your mental health. Consider seeking professional support from psychologists, therapists, or counselors. They can help you better understand yourself, alleviate feelings of isolation, and develop coping mechanisms and strategies, such as meditation, to manage stress.
If you or a loved one is struggling with managing stress, contact the Substance Abuse and Mental Health Services Administration (SAMHSA) National Helpline at 1-800-662-4357 for information on support and treatment facilities in your area.
While a conclusive diagnosis is not always attainable, support is. If your health concern persists or worsens, listen to your body and seek medical attention.
Although I have yet to receive a definitive explanation for the bump on my chest even after more than a decade, I have learned the importance of advocating for myself. While the bump has not disappeared, it no longer causes pain or concern because we have ruled out numerous life-threatening conditions.
I have temporarily paused my active pursuit of an answer and shifted my focus to addressing other medical concerns. However, I am no longer hesitant to ask questions, bring relevant research to my wellness visits, or provide photos for my doctors to review. I diligently track my symptoms and seek second opinions when necessary.
In the past year alone, I have consulted four different doctors to obtain a medical diagnosis. Each doctor presented varying approaches, opinions, and treatment plans.
I have come to realize that no one will be as invested in my health as I am. While this realization can be disheartening, it also empowers me. I trust my instincts and acknowledge that if something feels off, it probably is. The battle for answers may be arduous, but it is always worth the effort.