Many of you already know, but some may not. I started having weird health symptoms in January 2022 and have been seeing specialists and getting tests done ever since. Fast forward to now, I am STILL waiting for a diagnosis. I have more tests scheduled for April and it is torture waiting. So far I have- seen a PCP 5 times, saw an Allergist, and had skin testing and blood work done, saw a Rheumatologist and had more blood work done, saw an ENT, saw a Pulmonologist and had a PFT done, had an ultrasound of my swollen lymph nodes, and most recently I saw an Oncologist/Hematologist who ordered the CT scan, ultrasounds of my liver and spleen, and a biopsy.
Waiting for a diagnosis can be one of the most difficult things a person experiences. Getting a diagnosis can involve waiting to see a specialist (or in my case, multiple specialists), waiting for a test (or tests) to be scheduled, or waiting for lab results to come back.
Sometimes the uncertainty leaves you seemingly without an anchor. And you might have to deal with symptoms such as dizziness, nausea, or pain while you're waiting for an answer.
If you’re facing a life-changing diagnosis, the waiting can be extremely stressful. I am going to talk about the common emotions you might face when waiting for a diagnosis and provide some suggestions for coping with these feelings (ha! Easier said than done).
Impatience
Impatience is perhaps the first emotion many people feel when waiting for a diagnosis. As humans, we like a sense of control and it can be satisfying to take charge of a situation, solve a problem, and move forward. But waiting for diagnosis delays that process since you don't even know what you can do to solve the problem. You’re in limbo. 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. I have noticed I have been more irritable and short-tempered lately.
Frustration
Frustration refers to the feeling of having your purpose or action blocked. 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 (I prefer to use the term rage or stabby, but frustration sounds better).
As with impatience, frustration with your medical issue can carry over to other parts of your life. You may feel frustrated if there are mix-ups with your insurance or when test results come back inconclusive. Sometimes this frustration can erupt. After all, it may not feel "safe" to release your frustration with the clinic where you are receiving care, so you may finally let it go when your spouse forgets to pick up milk at the grocery store.
Anger
Many people may feel angry at times while waiting for an answer. 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 have often said that they've witnessed many patients and families yelling at medical staff. Unfortunately, this is common and while it’s not fair to the medical staff, they understand.
You may feel fed up with the entire process of diagnosis and feel like just walking away from the whole thing. I often feel like just running away from all of it and pretending it’s not happening.
Anxiety
Waiting a long time for a diagnosis can lead to feelings of having no control over things or being overwhelmed. 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 to go down that road, it is hard to stop it. You may have trouble sleeping at night, find yourself being very stressed, or can’t stop thinking about the possible diagnosis.
Anxiety, as with these other emotions, can carry over into other areas of your life. People with serious health issues on their minds may feel unable to make simple decisions, even decisions as simple as what outfit to wear.
Sadness and Depression
You may feel hopeless about your situation. Having the medical system constantly making you wait for things such as appointments, tests, consultations, results can make you feel like and just giving up. You may cry for no reason and not feel like doing much of anything.
How to Cope
Feeling confused and in the dark about your health issues and not knowing exactly how you should feel because you don't know what you're facing is normal. There are people who have even been relieved to get a bad diagnosis, because at least then you can start doing something to fix the problem.
There are some things you can do while you wait:
Talking with friends and family can help in dealing with these feelings while waiting for a diagnosis.
Some people find it helpful to join a support group (online or in-person) to talk with others who have experienced the same situation that you are going through.
Make sure you are being your own advocate in your care. If you do not feel that your healthcare providers are not communicating well, speak up.
See if there's anything that can be done to help control your symptoms, even if the treatments are only temporary until you find out what you will need to do for the long term.
Think about practical strategies to simplify your life. Do you need to hire a part-time nanny to help with the kids? Do you need to allow people to help you with things like cooking, cleaning, or errands? Do not be afraid to ask for help. Friends and family will be relieved and happy to have something to do to help you because they might be feeling helpless to help you.
Choose the people you spend time with carefully. Do you have good friends who help you be hopeful that you can spend more time with them? On the other hand, do you have "toxic friends" to who you may need to bid goodbye?
Support for the Loved Ones of Patients
It's important to note that your friends and family members may also experience many of these emotions while waiting for your diagnosis. In fact, the helplessness that loved ones often experience can magnify your feelings even further.
You or your loved ones might be afraid of being a burden on each other and may not always feel comfortable expressing frustration, impatience, or anxiety. There are many online communities dedicated to family caregivers, and this might be helpful for your loved ones.
Waiting for a diagnosis sucks. Plain and simple. Reach out for support, it is there. But know that anything you are feeling is normal. There is no right or wrong.
Love and Light,
Jacquelyn