Coping With a Sickness Curveball
All Liz Holzemer wanted to do was start a family. She and her husband, Mark, a former major league baseball pitcher, had been trying to conceive without success. But fertility troubles were only part of the picture; she was suffering from excruciating migraines and partial seizures. On February 3, 2000, she finally pinpointed the problem.
“Finally, I asked to have an MRI,” explains Liz, from Highlands Ranch, CO. “The image revealed that I had a massive brain tumor.” Though the tumor was benign, it was affecting her bodily functions and her doctors feared she would go into a coma within a matter of weeks. She was scheduled for brain surgery eight days after her diagnosis.
Like Liz, you may have received startling news after experiencing medical difficulties. Or perhaps your diagnosis came out of the blue after a routine checkup. Either way, your doctor’s bombshell likely was preceded by the chilling phrase, “There’s something I need to speak with you about.” This, as everyone knows, is a verbal cue that your life is about to change.
Receiving a medical diagnosis—whether it’s cancer, heart disease, diabetes or arthritis—means that your life is suddenly changing direction to focus on your health. During the first 30 days, your reaction and response to this medical diagnosis will set the stage for your recovery and long-term health.
Handling a Health Diagnosis
In general, a patient’s reaction to a health diagnosis is initially shock, even if the diagnosis is expected or fully treatable. “The brain tumor floored me,” says Liz, who wrote about her experience in her book Curveball: When Life Throws You a Brain Tumor. “It was definitely a curveball I didn’t see coming. It probably didn’t hit me until the second surgery.”
According to Jessie Gruman, Ph.D., president of the Center for the Advancement of Health and author of Aftershock: What to Do When the Doctor Gives You—Or Someone You Love—a Devastating Diagnosis, this reaction is quite common. “They can’t imagine that it’s happening to them, or how they can incorporate that news,” explains Gruman. “People experience physical shock—they are emotionally, cognitively and physically affected. They feel like life has shattered.”
Even if the patient suspects his or her own sickness, the diagnosis can bring on many different reactions. “Seventy-five percent of the time, my patients have an idea that something is going on,” says Vincent Pedre, M.D., a physician specializing in integrative medicine and clinical instructor in medicine at Mount Sinai Hospital in New York City. “Some people are expecting the diagnosis; some are worried and they don’t want to be diagnosed.”
Once you get past the initial shock of your health diagnosis, try to understand the implications of your sickness early on and be realistic about the treatment and the outcome. “During the first 30 days, you don’t know the geography of the condition, what will stay the same and what will change,” says Gruman. “Often we overestimate and inaccurately represent the real trajectory or possible trajectory of illness.”
Do some research to find out as much as you can about your health diagnosis, and try to stay away from any alarmist or inaccurate information. Don’t expect to understand it all right away—intense stress can lead to cognitive impairment, so the information you read during the first 30 days may not initially stick.
A Second Opinion and Questions
Though you may not be able to control your sickness, you can control the way you handle your condition. During the first 30 days, it’s important to be your own advocate. Before you start a treatment plan, you may want to ensure that the initial diagnosis was correct by getting a second opinion. According to a Harvard study of malpractice claims, the most misdiagnosed condition is cancer. Though your doctor’s assessment may be correct, you may want to seek another opinion—and get a fresh perspective on treatment options.
“Follow your gut,” says Pedre. “If you feel that your diagnosis is being missed, and you have an inkling that it might be something else, go get a second opinion.” Pedre explains that patients shouldn’t feel bad about asking to see another doctor, since many doctors understand that a second set of trained eyes could be helpful.
Cary Fleming from Woodside, NY, was diagnosed with two herniated spinal disks that required invasive surgery. His doctor told him that he would get better after six months with physical therapy, but his back didn’t improve at all. “I held their feet to the fire. I asked them why they couldn’t fix my back,” he says. “At this point, I was getting worse and worse to the point I could barely walk.” He went to four orthopedic surgeons and one neurologist before he received an accurate diagnosis—he not only had herniated disks, but the disks were severely degenerated. He finally found the right doctor who suggested inserting an artificial disk at one level in his back and to fuse two other disks together.
During the first 30 days after a health diagnosis, many questions come to mind. Asking your doctor questions about your condition is one of the most proactive ways to further your treatment and recovery. It’s important to write down these questions so they can be presented to the appropriate healthcare professional for answers. At the same time, regularly update your doctor regarding your symptoms and the treatment methods you prefer. After all, your doctor can’t fully treat you unless there’s clear communication about what’s going on inside your body.
“Make sure all your questions are answered. ‘Where did this illness come from?’ ‘Why did I get this?’ ‘What can I do?’ Challenge your doctors to give you information, and if they can’t, ask them for a good resource,” Pedre advises.
Battling Your Sickness
Once you have a firm health diagnosis and an acceptable treatment plan, invest yourself totally in your medical care by making sure you get to appointments on time, taking your medication, scheduling procedures and taking care of yourself.
Taking responsibility for your condition means accommodating your lifestyle to your new diagnosis. Depending on the severity of your case, you may need to make significant changes to your life to improve your health. When Judy DuBos from Baton Rouge, LA, was diagnosed with diabetes, she had to change her diet and exercise routine to improve her overall health. “My diagnosis forced me to pay attention to the content and quality of my food choices,” she says. “Before, I ate more junk than good food. I had very poor eating habits.” Now she not only has her insulin under control, but she feels a major increase in her energy levels as a result.
Pedre believes that many diagnoses can be traced back to lifestyle factors. “Often, it’s not just about the physical diagnosis,” Pedre says. “It’s about delving into the way people live their lives. The diagnosis is the messenger. Eating steak several times a week and not exercising is going to wear on your body.” As a proponent of integrative medicine, Pedre admits that not all doctors believe that lifestyle factors contribute to a medical condition, but research does point to the fact that incorporating exercise and a balanced diet can improve one’s overall health.
Even if you’re doing all you can to better your condition, sometimes talking about your sickness with a professional or your family members can make the experience that much easier to handle. “Know which people in your life can listen to you with an open heart and not render any judgment,” says Deborah King, Ph.D., author of Truth Heals: What You Hide Can Hurt You. “If you don’t know anyone like that, then doctors can usually recommend a support group for a particular illness.”
Roberta Graves*, who was diagnosed with lymphomatoid granulomatosis (LYG), or lesions on the brain, spends lots of time in the hospital and has built a support system there. “I ask the nursing staff what the weather is doing or just make idle conversation because I’ve found patients don’t really talk to the staff,” Roberta says. “I like making it a community—a kind of collaboration.”
Turning Sickness into Health
Depending on your health diagnosis, you may have to endure long treatments, testing and rehabilitation to recover from your sickness. Though it will be hard to endure, it’s important to maintain a positive attitude throughout the first 30 days and beyond. Much of your recovery will rely upon your own coping mechanisms. “You know how to take care of yourself in other times when you’ve experienced bad news,” Gruman says. “Draw on the strength you have.”
When Roberta is hospitalized, she draws on her strength and transforms her room so it reminds her of home. She sits in a chair instead of lying in the bed, brings photos from home to display around the room, wears her own clothes instead of a hospital gown, brings her own food and frequently goes for walks. “It’s a real challenge to hold onto health when you’re in a place of sickness,” explains Roberta. “But I try my hardest.”
Though Cary was facing a lifetime of spinal surgeries as a result of his injury, he stayed positive and toughed out his treatments. “It’s difficult to stay positive when your prognosis is really bad,” he says. “I was lucky that I found a doctor who was going to perform the surgery I needed.” Cary’s pain level is now significantly diminished and he no longer walks with a cane.
One way you can work to stay positive is by maintaining a sense of humor throughout your recovery. It may be hard to do that when you’re receiving regular injections or your medication imparts painful side effects. But if you can still find the lightness in life, it may make all the difference to your recovery. “Neutralizing those negative emotions by laughing gives you a respite from the emotional turmoil [of a diagnosis],” says Patty Wooten, a nurse humorist in Santa Cruz, CA. “Adding humor to life gives sick people a break from the panic cycle.”
Laughter is also healthy. Researchers at the University of Maryland School of Medicine found that laughing for just 15 minutes improves blood flow by 22%. Laughter also releases endorphins into your body, and that feel-good chemical can do wonders to improve your mood and overall sense of well-being.
Once you’ve gone through enough treatments, you will slowly start to feel better. Though you may not think so now, you’ll be able to feel good and laugh again. “Remember that you’re not always going to feel like this,” Gruman says. “Over time, you’ll feel better and more comfortable with your condition. That comfort will help you feel more confident and help you move forward.”
After two invasive brain surgeries, Liz’s body started to recover and she was feeling good again by the fall of the same year. Not too long after, Liz and Mark got what they wanted all along—Liz was going to have a baby. “My doctor called and said I was pregnant. I said, ‘That’s impossible!’ ” She gave birth to Hannah in 2001, and her son, Hunter, arrived on April Fools’ Day in 2004.
All in all, she’s learned from the experience and feels she’s a better mother for dealing with her diagnosis. “I have the improved version of the old me and I like it much better,” she explains.
You may one day be cured of your sickness, or you may learn to live with the condition for the rest of your life. Whatever happens, you’ll return to a “normal” state—you may look and feel a little different, but it’s still you.
The first 30 days of dealing with a health diagnosis doesn’t have to be a difficult and scary time. As long as you create a plan to attack your sickness head-on, you’ll reach your new “normal” in no time.
Additional reporting by Elizabeth Mayo.
If there was enough super glue in the world, it probably wouldn't hold me together; I'm literally falling apart. In one week, three diagnoses have floored me, and there are more tests and diagnoses to come. I'm only 57, but mentally I feel 30. If it wasn't for my husband and me asking the doctor for tests, none of this would have been found. Why? Why can't we rely on doctors to look at our symptoms, order tests, and catch things before they come life-threatening. My first surgery in 10/22, and the prognosis isn't good. I have until then to get everything in order for my husband. It's not enough time! But I can't put off the surgery if there's any chance of surviving this. I'm frustrated, scared, and panicked... not to mention the symptoms and pain from the illnesses. Life was changing for the better until all this. I know God will decide what will happen, but I'm finding it difficult to accept all of this. I feel like I'm in shock.
I appreciate this article.
I would appreciate learning new ways to cope when negative thoughts begin to creep in. I have a real, yet misunderstood illness. Regardless of its insidious idiopathy, it is here; it is real; it is difficult to live with on a daily basis.
It is Not 'merely depression', one of the most common misdiagnoses. (C.F.S.). And the hardest part of This illness, is you can't 'DO' much because your body is so overwhelmingly fatigued. It is physical!
I am handling it;, however, some days, humanity creeps in and I simply don't want to have to deal with it! Any ideas for how to face this and accept it all (loss of job; loss of mental clarity - at times; loss of general health; loss of my old self). More tips for reaching my new 'normal' would be most welcome!
Every time I go to the doctor she seems to find something else wrong with me so I leave with more referrals and wait for them to call and more prescriptions and wait for someone to take me.