I recently wrote an article for HealthSparq’s #WTFix initiative, “A scientific approach to being a patient: asking questions, making decisions and helping others,” which chronicled some of the challenges I faced in dealing with the health care system. I wrote about my approach to my own health care as a scientist and how that method has afforded me an excellent quality of life and the best prognosis I could have with brain cancer. That said, I understand that this was my personal approach, and that unfortunately it’s not a feasible one for a lot of people. Not everyone has access to peer-reviewed studies and, even if they did, reading, comprehending, and unemotionally applying scientific information to suit personal health needs is not the easiest thing to do, especially when under a lot of stress and the emotional burden of a new diagnosis. While aspects of how I faced my diagnosis and care may not be possible for everyone, there are certain take-aways that I’ve learned along my path that I believe anyone could use when faced with a health crisis. Below are five actions I found important for myself and others who are undergoing a new diagnosis or health crisis.
1. Bring a note taker. When going to a doctor’s appointment, especially for a diagnosis, it is helpful to have someone there to take notes. Have them write down as much information as possible because sometimes it doesn’t all make sense when emotions are running high. These notes will not only allow you to keep track of information, but also may help you think of new questions for future appointments. Some doctors will allow you to record your appointment on your phone, so that is also an option, but make sure you get consent from the physician first. Viewing your written notes in combination with the clinical notes from your online portal or provided to you from your family doctor can be a powerful way to help you get a complete picture of what’s going on and help you keep track of your health records.
2. Do not (only) Google. I will always recommend learning as much about your condition as possible. However, if you rely solely on the first few websites you find on Google, you will likely not be getting the most accurate or current information. Tell your doctor you would like to inform yourself and ask which websites provide good scientific information that they’d recommend. There are a number of disease-specific foundations that have information and current research sections and could be good places to start. Above all, be skeptical in your research. Health care is costly and a sad fact is that there are a lot of people that exploit this to make money. Not everyone is a scammer, but do not trust things that are marketed as a cure, or something that specifically uses a lot of elaborate claims full of phrases like, “the effective treatment that your Doctor doesn’t want you to know about.” Once you have found reputable scientific information, feel free to have open conversations with your doctor about the studies you’ve found. Let your physician clarify the things that you might fear or not understand.
3. Try to live in the present and not the past. After getting treatment for a diagnosis, many people lament on things that they don’t have or cannot do anymore. There is no doubt that going through a health crisis changes you – physically, mentally, and emotionally, but it doesn’t have to define you. By idolizing the past, you will set yourself up to never be happy. Absolutely cherish good memories but try to accept your new self as you are and set reasonable goals for what you want to achieve next. Be present and move forward. Allow yourself to start planning things that you can do, even if small, and look forward to them.
4. Use your social support network. People want to help and letting them do so can make both you and them feel better. Friends and family don’t always know how to act around people that are going through health problems, but you can educate them. You have the opportunity to be specific with your needs when asking for help. Isolation can be a very difficult side-effect of being ill – take advantage of mental and social stimulation from the people in your life that want to visit you.
5. Don’t be afraid to question your doctors (in a polite and discerning way). If you think something is wrong, communicate your concern. Understanding your condition and your options is important. Be your own advocate and ask your physicians what the rationale and goal of your treatments are. If your personal goals don’t line up with the treatment goals, make that clear. Prioritize your needs and clearly articulate them to your doctor. Don’t make the physician play detective and guess what the best course of action is (if there are multiple options). Being comfortable with your treatment plan by getting as many answers as you need will help you approach everything with determination, positivity, and commitment. A positive attitude certainly helps when dealing with a difficult treatment program.
I hope you find all this helpful. At the end of the day, you are the person who is most responsible for your health – and your health care. Do your best to control the things that you can – eating well, exercising, sleeping, engaging your brain regularly, being social, and actively working on your mental health while minimizing stress. You know your body the best. By keeping it as healthy as possible, you will be aware when things aren’t feeling right and can communicate these changes to your health team. Prevention and early aggressive therapy can help address problems before things get too far out of hand. I’ll leave you with this final request when facing your health care: be an active contributor!