Ten Steps for Managing a New Diagnosis

Recently a good friend of mine (I’ll call him Roger) started having significant health problems that were affecting him on a constant basis. Roger initially rationalized his constellation of symptoms, perhaps as his body fighting off a bad flu. Then he associated them with an especially hard exercise session. Many of us tend to wait and see, rather than rushing off to the doctor when symptoms first appear. We make our own guesses as to what might be happening to our bodies, hope for a quick resolution, and carry on with our lives.

In Roger’s case, the expected recovery did not occur, and instead, other symptoms surfaced. While some days were better than others, the problems continued. In the past month, after helping to coach Roger through several visits to physicians, lots of research, and consulting with others, it appears that Roger is finally getting some answers on his health issues. As I watch him face a new and unknown health crisis, it made me realize just how alarming and difficult the process can be. Based on Rogers recent experiences, here are some thoughts on managing a new health crisis:

1) As soon as it seems that the symptoms are not going away as hoped, take notes. Once you get to the doctor, it can be difficult to recreate what led up to the illness. Did you do something unusual with exercise? Work too long in the garden? Change something in your diet, or start a new medication? Sometimes just running through the list will provide you with an answer to what may be causing your symptoms. Also, if you do end up seeking professional help, the medical provider will appreciate a review of the information.

2) If you decide you need to see a medical provider, start with your primary care physician (PCP) first. While some insurance providers require a referral from your PCP, others allow you to go directly to a specialist. Unfortunately, going directly to a specialist when you are not sure what you are experiencing is like going to graduate school before getting your bachelors degree. The PCP can do a general review, based on your history, and do a preliminary ruling out of conditions that will lead to a more accurate referral. Think of your PCP as your home base. It is important that the PCP knows you are having a problem, as eventually you will be returning to the PCP for ongoing care, and the PCP and the specialist will need to communicate.

3) Do research, but be careful. Once Roger was given some possible diagnoses, it was easy to start an internet search to find out more about the conditions. Unfortunately for Roger, because the exact diagnosis was not determined, the information on the internet was sometimes not applicable to his situation. With so much online information, it is easy to get overwhelmed. Even worse, the information is unfiltered, which means you are looking at everything from the latest medical research to someones blog post. While some sources of information are obvious, others are harder to find. With enough review, certain themes may emerge that will hold some truth, but take the information as one source, not the only source.

4) Talk with others. Roger was hesitant to share what was happening to him, but an acquaintance noticed that he was having some difficulty, and asked what was wrong. It turned out that the acquaintance had experienced the same symptoms years before, and was able to talk about her treatment and recovery. This small world encounter, from someone Roger felt he could trust, made such a difference and gave him hope for eventually feeling better.

5) Prepare for your meeting with your provider, especially if it is a new relationship. When Roger was first referred to a specialist, he was surprised at how different the manner of the specialist was from that of his PCP. The communication was not as easy, and there were a lot of unanswered questions at the end of the appointment, causing Roger to question whether to continue with the specialist. So, Roger put together a list of questions for the next meeting, with the most important ones first. He was able to get through his questions, and felt that he had helped to guide the meeting to allow for a better experience.

6) Reset your expectations. For someone who has been healthy, a new set of symptoms can significantly change the rhythm and pace of ones life. Even for folks who have other health conditions, a new issue can add complications to ongoing health management. Roger went from doing a couple of runs a week, to barely being able to walk the dog. Rather than taking the perspective of what cannot be done, focus on what you are able to do, and don’t waste precious efforts trying to keep up with everything that was done in the past.What would have constituted a good day before may need to be redefined. As you figure out what is going on with your health, and get the symptoms under control, you can always ramp up again to pre-diagnosis levels.

7) Once you know your diagnosis, talk with others who are also experiencing the condition. This is where the internet may again be helpful. There are many associations formed for specific conditions and informal discussion groups online as well. Just being able to hear how someone else managed side effects of a new medication, or learned how to cope with new restrictions, can be extremely helpful.

8) If you are feeling frustrated with the care you are receiving, consider a second opinion. While there are many complications with bringing a new provider into an already confusing situation, there are times when it is necessary. The fit between the patient and the provider may not be quite right, or it may be that your provider is not meeting your needs. Before seeking a second opinion, be sure to follow some of the earlier suggestions. Write down your questions and providing a complete history, so that your provider has a chance to help you. Patients have a responsibility to participate in their care, just as providers are responsible for figuring out what is wrong and creating a reasonable treatment plan. Don’t blame the provider if you have not done your part.

9) Give the treatment a fair chance. By the time the diagnosis is confirmed, the body may take some time to bounce back. If you trust the providers judgment, then follow his or her plan of treatment completely. Let the provider know if something does not feel right or unanticipated issues occur with the treatment. Whatever you do, do not stop the treatment until you have had a chance to review any concerns with the provider. Patients may either start feeling better and stop taking a medication, or not feel better soon enough and do their own adjustments. Either option can be risky and requires medical consultation.

10)Throughout the initial diagnostic and treatment process do all you can to take care of yourself, and surround yourself with your favorite things and people. Think about what makes you feel good, and allow yourself to indulge. This doesnt mean gorging on ice cream, if you think you may be diabetic! Rather, go easy on yourself and take a break. You are dealing with a new health crisis, and this can help to balance the fear, the worries, and the losses that can accompany a new health condition, especially in the early stages.