I showed my mother, a registered nurse, and immediately her eyes widened. She pressed her fingers to the bump and said, “This could be a tumor.” I didn’t know enough about tumors to know what that meant or how it would impact my life, but then my mother said, “You might have to take a semester off.” The next day, a doctor pressed her hands to the bump. She didn’t think it was a tumor. To her, it felt like a dislocated rib, but that would be really painful, and I felt no pain. She sent me for x-rays. I waited for three days until the test results came back. They were inconclusive. So I visited another doctor, and another, and another. Every single one had a different theory, but no one could offer an explanation. Over the years, pain became associated with the bump, and came and went. One doctor suggested physical therapy, but that didn’t work. At times, it felt like a weight rested on my chest. Sometimes the pain extended to my shoulder and arm. But battling the healthcare system was—and still is—draining. It takes months, sometimes years, to schedule an appointment, see your primary care doctor, get a referral, get another appointment, get tests conducted, return to your doctor, get another test done, and then schedule an appointment with another provider who doesn’t know your medical history. This is, of course, only possible when you have insurance, financial stability, or the support needed to keep advocating. After a while, I grew tired of the process and the system. I know I’m not the only one who has felt this way. Far too many people suffer from undiagnosed, misdiagnosed, or unaddressed medical issues. Maybe you don’t have health insurance or don’t have the budget to pay for out-of-pocket costs. Maybe you don’t have time to take off work or don’t have a car. Maybe you don’t know where to begin or don’t feel comfortable talking to clinicians. Maybe you don’t have supportive doctors or are avoiding medical attention due to COVID-19. Or maybe, like me, you have all of the tools you need to get an answer and still can’t get one. Getting a diagnosis isn’t straightforward or easy, as it often involves a combination of factors, including testing and clinical reasoning. It takes time, money, and patience—and even then, you may not get the answer you need. We’ve all been there. You bring a medical concern to your doctor, but they dismiss it, tell you it’s “normal,” or say they’re not sure what it is, but you shouldn’t worry unless it persists. While your doctor’s intentions might be good, this can feel invalidating, hurtful, even maddening. If you’re unsatisfied, you have to seek a second opinion or a third or fourth. Even then, you may not get the answer you need. For some people, the health concern may resolve on its own, Carissa explains, but others may develop a life-long condition that affects their quality of life. If you’re dealing with a medical situation that hasn’t been diagnosed or hasn’t resulted in an effective intervention, then Hodgson suggests finding an advocate. This can be a medical expert, a loved one, a social worker, or a combination of people. You have to have the physical, mental, and emotional energy to pursue answers when you’re initially told there are none, Hodgson explains, and a support team can help you do that. Just know that you are not crazy, and you are certainly not alone. You know your body best. If you feel like something is off or wrong, then you have to trust that instinct. As you begin the journey to getting answers, make sure you protect your mental health. If you’re feeling overwhelmed, unsupported, or angered by the process, seek mental health care. Psychologists, therapists, and counselors can help you better understand yourself and feel less alone with coping skills and strategies, such as meditation. They can also help you process the stress that you’re bound to experience. You don’t always need a definitive diagnosis, but you do need support. If your health concern persists or worsens, please listen to your body and seek medical attention. For more mental health resources, see our National Helpline Database. While it’s been over a decade since I first discovered the bump on my chest, and I still don’t have an explanation, I’ve learned that advocacy is a must. The bump hasn’t shrunk. It’s still very visible and large enough to create a shadow against my skin, but it no longer hurts, and it no longer concerns me because we’ve ruled out so many conditions that I can’t help but assume that it isn’t going to kill me. Have I given up on finding an answer? No. But I’ve taken a break. I’ve shifted to other medical concerns. But no longer do I feel embarrassed asking questions, bringing my own research to wellness visits, or taking photos for my doctors to review. If I feel something is wrong, I say so. I track my symptoms, and I get second opinions. Just this year, I visited four different doctors to get a medical diagnosis. All four had differing approaches and opinions, as well as contradictory treatment plans. If something feels off, I know it probably is. Don’t give up. The battle may be long and uphill, but it’s always worth the effort.
