Common Feelings When Waiting for a Diagnosis


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.

Not only can waiting prolong your physical discomfort, but the uncertainty leaves you seemingly without an anchor. There are people who have even been relieved to get a bad diagnosis, because at least then you can start doing something to face the diagnosis. With uncertainty you are left in limbo, not knowing exactly how you should feel because you don’t know what you’re facing.

If you’re facing a possible life-changing diagnosis—and most rare diseases fall into this category—the waiting can be even more stressful. And if you’re facing a possible diagnosis of a terminal illness or one that will shorten you or your loved one’s life significantly, the waiting can be almost unbearable. Not only are you waiting for a diagnosis that may require treatment, but you are waiting for information that could affect your entire future.


Typical Emotions You May Experience When Waiting for a Medical Diagnosis

These are some of the feelings you may experience while waiting for a diagnosis, and they’re all completely normal.


Impatience is perhaps the first emotion many people feel when awaiting a diagnosis. 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.”

Impatience can work its way beyond your diagnosis and enter other parts of your life as well. You may feel impatient with the line to get out of the parking ramp at your medical center. You may feel impatient with your spouse or friends to whom you delegate tasks. After all, can’t they take care of something simple while you’re waiting for something so complex? You may even become impatient with yourself, wondering why it takes so long to do some of the activities you have always done.


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 three months, that the results of a specialized test takes six weeks, or that after seeing four doctors they still don’t know what’s wrong with you, you may feel very frustrated.

As with impatience, frustration with the medical system can carry over to other parts of your life. You may feel frustrated if there are mix-ups with your insurance. You may feel frustrated that the red tape of your insurance policy states you need to see someone who is booked for the next two months instead of someone who has an appointment tomorrow.

Sometimes this frustration can erupt. After all, it may not feel “safe” to release your frustration with the clinic where you are receiving care (that you need to be a “nice patient”) and finally let it go when your husband forgets to pick up milk at the grocery store.


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. Nurses will tell you that they’ve witnessed many 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 with how this diagnosis may affect you and your loved ones. Once you begin that train of thought, it can go on and on. 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. It is part of the fight or flight reaction designed to protect us from danger. Yet when the danger we are considering comes from our thoughts, rather than an acute and readily apparent danger in our midst (such as a lion attacking) the reaction can lead to further anxiety and stress as now our body is reacting as well (with an increased heart rate, rapid breathing, and more).

Anxiety, as with these other emotions, can carry over into other areas of your life. People with cancer sometimes comment that they feel unable to make simple decisions, even decisions as simple as what outfit to wear.

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.

It can be very difficult, at times, to know whether you are dealing with normal sadness or depression. Don’t be afraid to ask for help.

The Bottom Line

The truth is that 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. Some people find it helpful to connect with a support group (or an online community, especially with rare diseases) which offers the opportunity for you to talk with others who have experienced these emotions. Often, just being able to hear from someone who has felt the same things is an enormous help, reminding you that even though you are waiting alone, you are not alone.

In addition to being normal, there are a few things you can do which may help (besides realizing you are not alone). Make sure you are being your own advocate in your care. If you do not feel that you are on the right track or if you feel your healthcare providers are not communicating well, speak up. As we noted, symptoms related to your diagnosis can aggravate these feelings.

If you are coping with chronic pain, make sure this is being addressed. Sometimes a consult with a pain doctor is needed in addition to whatever else you are going through (yes, sorry, another appointment).

Ask yourself if there is anything else you can do (short of getting your diagnosis more rapidly). Do you need to hire a part-time nanny to help with the kids? Do you need to allow people to help you (this is difficult for those with type A personalities)?

What about the people in your midst. Do you have good friends who help you be hopeful that you can spend more time with? On the other hand, do you have “toxic friends” who you may need to bid goodbye to?

Support for the Loved Ones of Patients

It’s important to note that, while few people experience illness alone, few people experience the frustration of waiting alone. Friends and family members may also experience all of these emotions while waiting for a diagnosis. In fact, the helplessness that loved ones often experience can magnify these feelings even further.

At the same time, you may not feel as comfortable expressing your frustration, impatience, and anxiety. As for those facing a possible difficult diagnosis, there are thankfully many online communities dedicated to family caregivers facing a difficult diagnosis (or waiting for one) in a loved one.

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