Waiting for a diagnosis can be one of the most difficult things a person experiences. Getting a diagnosis may involve waiting to see a specialist, to schedule a test, or to wait for lab results to come back.
At times, uncertainty makes it seem like you don’t have an anchor. While waiting for an answer, you may need to deal with symptoms such as dizziness, nausea, or pain.
The wait can be especially stressful if you’re facing a potentially life-changing diagnosis. This article describes common emotions you may face while waiting for a diagnosis, and offers some tips for dealing with them.
Typical emotions you may experience while waiting for a medical diagnosis
It’s important for you to know that the feelings you may be facing are completely normal. Everyone can experience some or all of it, and you may experience some at different times. Be kind to yourself and don’t blame yourself for how you feel. But think about coping strategies you might take to help yourself gain some level of comfort and peace of mind while you wait.
Irritability may be the first feeling many people feel while waiting for a diagnosis. Sometimes it’s satisfying to take charge, solve problems, and move on. But waiting for a diagnosis delays the process because you don’t even know what you can do to fix the problem.
Waiting for an appointment, procedure, or consultation may give you a “hurry up and wait” feeling.
Impatience can go beyond your diagnosis and into other parts of your life. You might get impatient with the line coming out of the store parking ramp. You may be impatient with your spouse or friends. You may even become impatient with yourself, wondering why it’s taking so long to complete some of the activities you’ve been doing.
Frustration is the feeling that your purpose or action is blocked. It can be very frustrating when you are told that you won’t be able to make an appointment with a specialist for three months, that the results of a specialist test will take six weeks, or that after seeing four doctors they still don’t know your problem.
Like impatience, frustration with your medical problems can carry over to other areas of your life. If your insurance is confused or your test results are inconclusive, you may be frustrated.
Sometimes this frustration flares up. After all, it’s probably not “safe” to release your frustration with the clinic where you’re receiving care (you might want to be seen as a “good patient”), so you may end up letting go of buying milk at the grocery store when your spouse forgets to choose .
What to do when you can’t get a diagnosis
Many people sometimes get angry while waiting for an answer. This anger is usually directed at the medical system that keeps you waiting for a diagnosis. Sometimes anger can be turned into something productive, like defending yourself or a loved one.
Sometimes, however, anger erupts inappropriately, such as when a lab technician is trying to take a sample of your blood for testing. Nurses often say they have witnessed many patients and families yelling at medical staff — and at each other.
You may get bored with the whole diagnostic process and feel like walking away from the whole thing.
Waiting for a long time for a diagnosis with serious consequences can lead to a feeling of being unable to control things or feeling overwhelmed. You may feel restless and apprehensive. You may feel nervous, and you may be troubled by how this diagnosis affects you and your loved ones. Once you start this line of thinking, it can go on forever. You may have trouble sleeping at night, find yourself nervous, or be preoccupied with a diagnosis.
Anxiety is a normal response to feeling threatened. It’s part of the fight-or-flight response designed to protect us from danger. However, when the danger we are considering comes from our minds rather than an acute and obvious danger among us (such as a lion attack), the response can lead to further anxiety and stress, leading to physical responses such as increased heart rate, rapid breathing, etc. Wait.
Like these other emotions, anxiety can carry over into other areas of your life. People with serious health problems may feel unable to make simple decisions, even as simple as what to wear.
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sadness and depression
You may feel hopeless about your situation. Having the healthcare system keep you waiting for things—appointments, tests, consultations, results—can make you feel like giving in and giving up. You may cry for no reason and don’t want to do anything.
Sometimes it can be hard to know if you are dealing with situational grief or depression. Don’t be afraid to ask for help.
how to respond
With uncertainty about your health issues, you’re stuck because you don’t know what you’re facing, so you don’t know how you should feel. Some people are even relieved to get a false diagnosis, because at least then you can start doing something to face the diagnosis.
While waiting, you can do a few things:
- For some people, talking with friends, family, clergy and/or counselors can help process these feelings while waiting for a diagnosis.
- Some people find it helpful to connect with support groups (or online communities, especially for rare diseases), which give you the opportunity to talk to others who have gone through the same situation as you. Often, just being able to hear from someone who feels the same way is a huge help in reminding you that you’re not alone.
- Make sure you are your own advocate. If you don’t think you’re on the right track, or if you feel your healthcare provider is miscommunicating, speak up.
- See if anything can be done to help manage your symptoms, even if the intervention is temporary, until you find the treatment you need long-term.
- Think of practical strategies to simplify your life. Do you need to hire a part-time nanny to help with child care? Do you need someone to help you cook, clean or run errands?
- Choose carefully who you spend time with. Do you have good friends to help you and wish you could spend more time together? On the other hand, do you have a “toxic friend” who might need to say goodbye?
If you have chronic pain, be sure to discuss it with your healthcare provider. Consultation with a pain doctor is sometimes necessary to help manage pain.
Support the patient’s loved ones
It’s important to note that your friends and family may also experience many of these emotions while waiting for your diagnosis. In fact, the helplessness your loved one often experiences can further amplify your feelings.
You or a loved one may be afraid of burdening each other and may not always feel comfortable expressing frustration, impatience, or anxiety. There are many online communities dedicated to home caregivers that may be helpful to your loved one.
Why am I already grieving when someone I love is alive?
It is normal to have a range of emotions while waiting for a diagnosis. The longer you wait, the more ups and downs you may have and the stronger your feelings may become. First, don’t be too hard on yourself. Consider talking to someone who is willing to listen and who is compassionate, such as a friend, counselor, clergyman, or peer in a support group. Knowing the situation you may be facing can help – but don’t rush the process – and you’ll be ready to learn more when it suits you.