Gary McClain, PhD, is a therapist who specializes in helping clients deal with the emotional impact of chronic and life-threatening illnesses.
Zach has been living with a chronic condition for a few years. Over that time, he has learned a lot about his condition. And he has learned to monitor his body pretty carefully.
A couple of weeks ago, he noticed a symptom that he hadn’t experienced before. Now again, Zach knows his own body, and he knew this wasn’t a symptom he had experienced before. Furthermore, he is educated enough about his chronic condition to also know that this isn’t a symptom that is typical of his diagnosis.
To say the least, Zach was worried. And so he made an appointment with his physician.
Talking things over
The doctor asked him a few questions. He wanted to know when Zach first noticed the new symptom. An easy question for Zach to answer. He also wanted to know if the symptom was causing Zach any discomfort. He admitted to his doctor that no, he wasn’t feeling discomfort. But that didn’t leave Zach any less concerned.
After examining him, Zach’s doctor said, “I don’t see a need to do any testing right now. Keep monitoring yourself like you have been. At this point, I recommend we watch and wait.”
Zach expressed his concern, but his physician insisted the “watch and wait” approach, or, as he called it, “watchful waiting,” was best.
Worrying about what-ifs
That evening, Zach wasn’t feeling all that happy with his doctor’s decision. He realized his doctor was trying not to set off any alarms and was, instead, trying to be reassuring. But by Zach’s way of thinking, any out-of-the-ordinary symptom should be thoroughly explored, including whatever testing might be required. Zach’s doctor had done a good job in treating his chronic condition, and he trusted him. Yet Zach had a nagging fear that in this case his doctor was being too casual and, in effect, not taking an educated patient seriously.
Have you ever felt like Zach? When you’re living with a chronic condition, you know what it takes to maintain your health as well as possible, including self-monitoring for familiar as well as unfamiliar symptoms. How can you help not being alarmed when you do experience an unfamiliar symptom? And while you probably trust your doctor, it’s hard not to view “let’s wait and see” as taking an unnecessary risk.
So what do you do? Here are some ideas to consider:
Ask more questions. Has your doctor seen anything like this before? If so, what was the ultimate diagnosis? And was it related to the primary chronic condition, or was it related to another diagnosis? If your doctor has not seen this symptom before, or at least not in someone with your condition, what are his or her initial thoughts about it? In other words, get a sense of your doctor’s experience with patients who share your symptom or symptoms.
Get clarification on exactly what you’re waiting for. Hopefully, your doctor can give you specifics regarding just what it means to be watching your symptom together. Watching to see if it persists? Worsens? And if so, worsens how? Or are we watching to see if it changes in some way? And for how long are we watching before we take action?
Also get clarification on potential actions your doctor is considering. If and when your doctor decides it is necessary to act in regard to your symptom, what will the action be? Testing? A referral to a specialist? A medication? Again, ask your doctor to be as specific as possible.
Getting clarification might give you some peace of mind, knowing your doctor has a strategy.
And then do some of your own research based on what you hear. As always, stay on top of your health. Be careful to stick with widely known and well-trusted sources if you search for information online.
Be willing to trust your physician. At least to a point. Have you had a good track record with your doctor? If so, then this may be a good reason to give him or her the benefit of the doubt and trust that he or she knows what’s best. That can help you to be more willing to do some watchful waiting alongside your doctor. Again, be aware of the specific parameters your doctor had laid out in terms of what you are watching for and for how long.
Face the fear and anxiety. This is your health. And an unfamiliar symptom is scary. Of course you want to take the best possible care of yourself, including making sure your doctor is following up on anything and everything that might have a negative impact on your health. Don’t swallow your feelings. Feeling fearful and anxious is normal in a situation like this.
Accept that uncertainty is part of life. Humans sure don’t do well with uncertain situations. We want to know! And have control! But one of the greatest lessons of a chronic condition is that life is uncertain. This is another one of those times when you may have to sit with your uncertainty, at least for a while. You’ve been down this road before.
Pay attention to your self-talk. Managing emotions that might be coming up for you—especially fear and anxiety—starts with the voice inside of your head. All those what-ifs can lead to what mental health professionals call “catastrophic thinking”—assuming the absolute worse. When we don’t have information, unfortunately our minds are all too willing to fill in the gap, and what better way to do it than imagining the worst? Actually, there is a better way. It’s only human to conjure up catastrophes in our minds. But we don’t have to follow those thoughts down the rabbit hole. Instead, work with yourself to remain optimistic during this uncertain time. Your self-talk might include: “I trust my doctor and we’re watching this together.” “I’ll know when I know. The answers will unfold over time.” “Whatever this is, I’ve got lots of support.”
And then get support. Talk it out with friends or family members who are willing to listen. Talking helps you to keep your perspective and not fall into catastrophic thinking.
As always, be your own best advocate. Keep your doctor informed of anything related to your unfamiliar symptom or symptoms that causes you alarm, as well as any physical discomfort or interruptions of your daily routine that you experience. This is your health. And you and your doctor are a team. So don’t hesitate to be high maintenance.
If you consider a second opinion, consider it carefully. If you sense that your physician is not being as attentive as you need him or her to be, and your unfamiliar symptom, or symptoms, continue, then you may want to consider getting a second opinion. If you do, make sure you are going to a doctor who practices the specialty most likely to treat your symptom. Ideally, your doctor should be part of this decision and even recommend the specialist.
But also consider the economics. If you are going to seek further medical attention, or demand further testing or treatment from your regular physician, consider the costs involved. Medical tests are expensive, and drive up healthcare costs that must in turn be passed onto the consumer. And that’s you. This is not to imply that you should deny yourself needed testing or treatment. But we all benefit when, along with our physicians, we ask the question, “Is this really necessary?”
Symptoms that seem to come out of nowhere can be scary. Being told by your doctor to watch and wait can prolong the uncertainty at a time when you want answers. Get specific with your physician regarding his or her strategy. Get informed. Advocate for yourself. And follow your instincts. Nobody knows your body like you do!
Has your doctor ever recommended “watchful waiting”? What happened? Add a comment below and tell our community about your experience.