Feelings While Waiting for a Diagnosis

Common Emotions While Waiting for Medical Test Results

Waiting for a diagnosis is difficult
Waiting for a diagnosis may make you impatient, frustrated, or anxious. Photo © Getty Images

Why Waiting for a Diagnosis is so Difficult

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 looking at what may be your entire future. All of your dreams and hopes.

These are some of the feelings you may experience while waiting for a diagnosis. Have you felt like this?

Impatience While Waiting

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.” For example, while waiting a week for the pathology results from her biopsy to come back from the lab, one woman said, “I feel like a caged tiger.” She wanted to be doing something about her diagnosis, not just waiting.

Another woman 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.

Impatience can works 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

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 take 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 need to be a "nice patient") and finally let it go when your husband forgets to pick up milk at the grocery store.

Anger

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.

Anxiety

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 if the sadness is dragging you down.

Bottom Line - Normal Reactions to Waiting

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. 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 health care 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 who have 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?

For Loved Ones

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.

Sources:

Kasper, Dennis L.., Anthony S. Fauci, and Stephen L.. Hauser. Harrison's Principles of Internal Medicine. New York: Mc Graw Hill education, 2015. Print.

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