Updated: Sep 7, 2021
Few things in life can prepare you for an unexpected medical diagnosis. Whether it is a pediatrician telling new parents, “Your child can’t see,” an oncologist explaining to a woman, “the lump in your breast is cancerous,” a specialist proposing a series of tests in an attempt to rule out a spouse’s possible amyotrophic lateral sclerosis (ALS), or a parent calling an adult child to deliver the news, “Remember when mom got lost on the way home from work? We saw a Doctor. He think’s it is Alzheimer’s Disease.”
There is no set of previous experiences that allow you to easily transition into, “Okay. What now?” Instead, it takes time to process the information, figure out what it means to us, now and in the near and distant future, and determine how to go about dealing with the diagnosis.
Whether a diagnosis involves a temporary condition, a life-threatening illness, or something in between, dealing with the diagnosis is essential to accept healing. Different people will process the information differently. Some will research obsessively. Others turn to prayer. Still others choose not to discuss it. The fact of the matter is a devastating medical diagnosis merits time to grieve. Probably more time than you would ever think.
A Diagnosis May Include Fearing The Life You Lived Is Gone Forever
My daughter was diagnosed with an obscure eye disorder at just nine weeks of age. No one could tell us if she would see, or how much she would see. It would take 9 years to learn what the outcome would be. The simple truth is, no one can live on the edge of anxiety for 9 long years, wondering every day if you are doing enough, if you know enough, if there is something else out there you should do or should learn. That is far too much stress.
While no parent produces the perfect child, at just nine weeks of age, babies are still doing a pretty good job of convincing their parents they may be the first perfect child ever born. Our daughter was no different. Most parents get the luxury of learning their child isn’t perfect as said child is having the mother of all meltdowns in aisle 5 of the grocery store at about age two.
We, on the other hand, learned our child wasn’t perfect during a mount of anxiety while waiting on the 8th floor of a university hospital after having seen 9 specialists in 2 days. It felt like the world had tipped slightly off its axis. Her father and I struggled to deal with our new reality and couldn't even begin to grieve our loss.
Every medical diagnosis comes with loss. The loss of the dream of how you thought your life was going to be. Whether the diagnosis pertains to your child, your spouse, your parent, or yourself, the diagnosis indelibly changes your plans for this one great life. While others may have it worse, or while there may be hope for a full recovery, there is no denying the fact that things are different now. And that merits a grieving process for the loss.
In 1969, Elizabeth Kübler-Ross identified 5 stages of grief, including denial, anger, bargaining, depression, and acceptance. For many years, Ross’s stages of grief were simply accepted without question. However, a recent study of how the average person processes the loss of a family member both cognitively and emotionally reveals some important information. While the study found participants did indeed experience disbelief, yearning, anger, depression, and acceptance, they did not necessarily do so in succession. Further, the study showed different grief indicators became more or less intense with the passage of time.
Searching For New Normal's And Restructure Meaning
As time went on and I got used to the idea of my child’s condition, I described it to others as our “new normal.”
We learned words like lensectomy and occlusion therapy. Our “normal day” looked different than the days of other people who had children my daughter’s age. Turns out, I’m not the only one who found a “new normal.” Studies on people who experience grief, loss, and chronic pain reveal two themes, “relearning the world” and “adaptation.” Researchers describe it as “relearning the world while walking backwards and living forward.”