The temptation was overwhelming. I typed “google.com” into my Internet browser and stepped into a hypochondriac’s dream. Once at Google’s home page, the search bar begged for something interesting. My fingers clicked out “kidney disease and easily bruising.” I’d had this bruise on my leg for a week. It wasn’t dramatic, but I didn’t remember how I had gotten it. I wanted Google to confirm my worst fears, that I was heading toward, or already in, kidney failure.
After my Portland doctor first mentioned the T word, I fueled my worries with a new pastime. I would watch for physical oddities and head to my diagnosing machine, a.k.a. the Internet, for a stranger to tell me that my health was careening down a steep decline. I was searching “kidney disease and shortness of breath,” “kidney disease and fatigue,” “kidney disease and symptoms,” “kidney disease and transplant,” and even “itching”— yes, “kidney disease and itching.” Each search delivered hundreds of sites that predicted what my future would look like. I got to read stories about people whose kidneys were fine and then took a dramatic turn for the worse. I learned that I could develop a host of creepy symptoms as my body reacted to the toxins my kidney would eventually be unable to filter from my body.
Hours would go by as I got sucked into a world of pseudoscience that freaked me out. What started out as some mild fatigue and shortness of breath turned into exhaustion and a distinct tightness in my chest. I was playing mind games, and the Internet was winning. The more I searched, the worse I felt—and the more I wanted to search. I wasn’t searching for how to become healthier, I was searching for how I was going to become sicker. And it was literally making me sick.
The new pastime
The Internet has made it possible to effortlessly feed our worries. While some information is helpful, there are a ton of blogs, forums, articles, and news stories that can incite fear. When you start to feel off, it is way too easy to reach for the Internet to figure out what you’ve got and if dying is a possible side effect. This can easily lead to a cycle of symptom hawking.
Where I live, we constantly see hawks circling the sky looking for prey. With laser precision, they can see through tall grasses and dense forests for anything that moves. Like the hawk, we scan our bodies for anything out of the ordinary to feed the Internet. Especially with a new diagnosis, like I did with kidney disease, you can quickly do a number on your stress level by searching in this way.
When you start with one symptom, you usually come across a list of numerous other things to watch for and read about. Afternoons—heck, even days, can be spent doing one search after another. We have all become self-appointed medical experts.
There are lots of people out there who have opinions about every aspect of your treatment, and it is the vocal complainers who tend to post the most often. When things work, people don’t feel the need to tell everyone; but if someone had a bad experience, they want to warn the world. That’s why you get less of the feel-good stories and more of the freaky ones.
Only looking at the worst-case scenarios and searching every scratch, bump, or bruise you have is placing focus on things that are largely out of your control. You are an owner, and owners focus on what is in their control. Each search comes with a choice. You can choose to feed your worries or you can choose to feed your ability to heal.
Researching your health is about balance, obtaining knowledge without becoming obsessed. As soon as I began to search in healthy ways, I noticed that many of the symptoms I had been hawking went away.
Knowledge gives power
When you get diagnosed, you have to give much of your power away to doctors, medications, and unpredictable symptoms. Educating yourself about what is going on with your body and how to manage your health is a way to participate in your care. The unknown is scary because we assume that the slightest dusting of snow may cause an avalanche.
It is important to trust your health care team, but ultimately, you are responsible for your own care. You need all the power you can get, and knowledge delivers. Learning about your body enables you to:
- Provide clues toward your diagnosis.
- Seek a lifestyle that is beneficial for your health.
- Follow care plans.
- Explain what’s going on to new members of your health care team.
- Understand when a symptom is of concern.
- Comprehend laboratory test results.
- Recognize health emergencies.
- Talk with your doctor about the benefits and risks of treatment.
- Mentally prepare for the future of coping with illness.
- Avoid harmful treatments.
- Prevent adverse drug interactions.
Before you understand your diagnosis, it can be easy to turn away from what is happening with your body. Ignoring the advice of your doctors and neglecting your health is counterproductive. Denial breeds all sorts of excuses as to why you don’t need to change your diet, start exercising, or take the medication prescribed. This type of fear masquerades as hope that if you pretend things are as they used to be, maybe they will be. Learning the facts of your illness can be scary, but it also helps you woman-up and take care of what needs to be taken care of. That is power.
Danea Horn is the author of Chronic Resilience: 10 Sanity-Saving Strategies for Women Coping with the Stress of Illness and blogs at Chronic Resilience.