The Uncertainty of No Diagnosis: How to Cope Without the Answers

When you visit your doctor or a specialist with unexplained symptoms, you expect to leave with answers. But what happens when there's no diagnosis? This can be frustrating and emotionally draining, and it can make it difficult to care for yourself. Furthermore, you may be feeling a sense of worthlessness. You're sure something is wrong, but without a diagnosis, your ailment or illness lacks legitimacy.

If you are struggling with a medical illness that has not yet been diagnosed, here are some ways to help you cope and navigate the uncertainty.

Build a Stronger Bond With Your Doctor

Although you may not have a diagnosis, it's important to keep up communication and continue to build a strong relationship with your doctor. Make sure to schedule routine follow-up appointments to monitor any changes in your condition. This is critical not only for further clarity but also because your doctor may have discovered new information that might lead to a diagnosis.

Sometimes, you may find your physician just isn't the right fit, and that's OK. Don't be afraid to end the relationship. In life, there are people we like and others we don't like — a positive relationship with your physician will make everything easier.

Advocate for Yourself

Trust your intuition. Rare conditions or diseases can be difficult to diagnosis. It might be helpful to visit an academic medical center, where there's access to the latest research and technology, and a wealth of specialists from multiple disciplines with whom to consult.

Empower yourself. When visiting your primary care physician, ask what you can do to help facilitate your recovery, such as keeping a journal of your symptoms to potentially reveal a pattern that's crucial to achieving a diagnosis. Research your symptoms to identify possible diagnoses. Contact specialists who are devoted to treating patients with your symptoms and ask if they'd be willing to evaluate you.

Part of your diagnostic journey means you and your care team need to coordinate communication. If you choose to get a second opinion, make sure your primary care provider is kept in the loop and is part of the decision-making process. Ideally, your physician will support your desire for a proper diagnosis. If not, move on.

Become an Expert/Do Your Own Research

If your physician or specialists haven't been able to make a definitive diagnosis, consider exploring research studies or clinical trials. The Undiagnosed Diseases Network (UDN), for example, brings together clinical and research experts from across the country to solve challenging medical mysteries, and help patients and families living with undiagnosed diseases.

The National Institutes of Health also has a website that offers current information on privately and publicly supported clinical research studies. It allows you to search general categories of symptoms, conditions, and diseases, and certain studies accept individuals without a diagnosis in the hope that one will be discovered.

Surround Yourself With Family and Friends

Don't underestimate the power of human connection. It makes us feel safe, supported, and even healthier. According to a recent study, loneliness and isolation may be a greater public health hazard than obesity, and it may create a greater risk for premature mortality. Although loneliness is a state of mind, environmental factors can play a big part.

If you find yourself withdrawing from social activities, in part because of your health and the frustration of having no diagnosis, try to reach out to loved ones for support. They may not understand exactly what you're going through, but just being in the company of others can be healing.

You could also seek out support groups with patients going through a similar experience. Even if you haven't been diagnosed, you might be surprised to find there are people with symptoms that align with yours who can support you in ways no one else can.

Sometimes being left in the dark isn't because there's no diagnosis. Sometimes, a set of symptoms has a diagnosis, but it's so new, uncommon, or rare that doctors don't know how to recognize it. It's possible you may have to live with the unknown. It doesn't mean you've given up; it just means for the time being, it will be necessary to simply find a way to manage the condition comfortably. In the meantime, continue working with your doctor to get the answers you seek.