Contributing Author: Alice Krueger
It doesn't matter whether she’s told you that you have a chronic illness, a life-threatening terminal condition, or an incurable disease. It could be cancer, multiple sclerosis, AIDS, Parkinson's, diabetes or Alzheimer's.
You need to take the same seven steps, no matter what your new diagnosis is.
- Take a deep breath.
- You will undoubtedly have lots of questions, and you want answers fast. But you need to settle down first, emotionally as well as mentally. Rarely do you need to make treatment or care plans immediately. Ask the doctor how much time you have from here forward to do your research and choose the best path for life after your diagnosis.
- Get a second opinion.
- This is really critical, especially if the diagnosed condition is life-threatening or is rare. After all, this doctor is giving you her interpretation of test results, and sometimes test results are not accurate. Most insurance plans provide options for getting another doctor to confirm the diagnosis. Ask your doctor to recommend someone (outside her practice) with whom you can get a quick appointment for a second opinion. If she is offended by that question, or appears unwilling to make a recommendation, that’s proof positive that you NEED a second opinion.
- Choose the right doctor.
- You will probably want to consult a specialist, someone with expertise and experience treating the condition you’ve been diagnosed with. Be sure to check with your insurance plan to see what will be covered.
- Gather your team.
- Your care team will probably be larger than just the doctor offering the diagnosis. It may include psychologists, social workers, counselors, physical and occupational therapists, nutritionists, and other health professionals who provide physical, mental and emotional care. Beyond traditional healthcare, your team may include clergy and alternative health practitioners such as acupuncturists, yogis, and meditation instructors. Your team will also include family and friends. Create a master list of all of your team members and their contact information, and share it with the team.
- Bring an advocate to your appointments.
- This is one role your non-healthcare team members can fill. It is likely that you will not be thinking clearly about all the information the medical team is trying to offer. An advocate can take notes, ask the questions you've agreed upon ahead of time, and ensure that you understand what is being said to you. Going over the written notes your advocate has taken after the appointment is over will help you think more clearly.
- Check into clinical trials.
- You may feel like there’s nothing you can add to the care you’re being given. Not so—you can contribute to ongoing research about your condition. Clinical trials are often research studies to find out about the safety and effectiveness of new drugs, medical devices and procedures. Other clinical trials are about screening or diagnostic tests, preventive procedures, or quality of life supports. Testing on human subjects follows extensive laboratory and animal testing. To learn more about how clinical trials work, please click here: https://www.ciscrp.org/.
Participating in a clinical trial offers hope when existing treatments are not working. It is also how you can access promising new treatments, while getting additional close medical attention. And it’s a way to repay society for the money and effort spent in developing your current treatment options, by helping develop new and improved options for future patients.
You can look on the website of the national support group for your particular diagnosis and often find studies you might consider taking part in. A collection of clinical trials in the US is found by clicking here: https://clinicaltrials.gov/ct2/search/index. A database of clinical trials all over the world is found by clicking here: http://www.centerwatch.com/.
- Do what is right for you.
- Ultimately, your course of action is your decision. Think through, for instance, who you want to share the diagnosis with. Some people prefer total privacy, others may share with family or a few close friends. (You can create an account on https://www.caringbridge.org/ or make a private Facebook group for those you wish to include in your communication tree.)
How you determine your quality of life is unique to you. You don’t have to take anyone else’s advice, although you will probably be offered a lot. Make your own choices, and live your best possible life after diagnosis.
Images from Morgefile
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