Waiting for a diagnosis can be one of the most difficult things a person experiences. If you’re having symptoms that are unpleasant, such as pain, nausea, difficulty moving around, dizziness, or trouble sleeping (to name a few), waiting to see a specialist, for a test to be scheduled, or for lab results to come back just prolongs your discomfort.
If you’re facing a possible life-changing diagnosis -- and most rare diseases fall into this category -- the waiting can be stressful. And if you’re facing a possible diagnosis of a terminal illness, or one that will shorten your or your loved one’s life significantly, the waiting can be almost unbearable.
These are some of the feelings you may experience while waiting for a diagnosis. Have you felt like this?
This is perhaps the first emotion many people feel. Many of us are “doers,” used to taking charge of a situation, solving a problem, and moving forward. Waiting for an appointment, a procedure, or a consultation may give you the feeling of “hurry up and wait.” For example, while waiting a week for the pathology results from her biopsy
to come back from the lab, my friend said, “I feel like a caged tiger.” She wanted to be doing
something about her diagnosis, not just waiting. Another friend was told she’d need an ultrasound for diagnosis. “OK, can we do that today?” she said to the doctor, and was disappointed to hear it couldn’t be scheduled until the next week.
Frustration refers to the blocking of a purpose or action. Someone who is frustrated about getting a diagnosis may feel dissatisfied, anxious, or even depressed. When you are told you cannot get an appointment with a specialist for 3 months, that the results of a specialized test take 6 weeks, or that after seeing 4 doctors they still don’t know what’s wrong with you, you may feel very frustrated.
Many people who are impatient and/or frustrated may feel angry. This anger is often directed at the medical system that is making you wait for your diagnosis. Sometimes the angry feelings can be channeled into something productive, like advocating for yourself or a loved one. However, sometimes the angry feelings burst out inappropriately, like on the lab technician who’s trying to take your blood sample for a test. As a nurse, I’ve seen patients and families yelling at medical staff -- and at each other. You may feel fed up with the entire process of diagnosis and feel like just walking away from the whole thing.
If you are waiting for a diagnosis that has serious implications, you may feel uneasy and apprehensive. You may feel tense and your mind may be troubled about how this diagnosis may affect you and your loved ones. You may have trouble sleeping at night, find yourself being nervous, or be preoccupied with thinking about the diagnosis. Anxiety is a normal response to the feeling of being threatened.
Sadness and Depression
Waiting a long time for a diagnosis can easily lead to feelings of having no control over things or being overwhelmed. You may feel hopeless about your situation. Having the medical system constantly making you wait for things -- appointments, tests, consultations, results -- can make you feel like throwing in the towel and just giving up. You may cry for no reason and not feel like doing much of anything.
The truth is, all of these feelings are normal for someone who is waiting for a diagnosis. The longer you have to wait, the more feelings you may experience, and the more intense those feelings may become. For most people, talking with friends, family, a clergy person, and/or a counselor is very helpful in dealing with these feelings while waiting for that diagnosis.