STEPS TO COPE WITH A NEW DIAGNOSIS / SERIOUS ILLNESS / INJURY

Knowledge. Knowledge truly is power—and with that power comes peace of mind. Try to find the resources on your diagnosis that are written specifically for patients. If one doctor doesn’t know, keep asking. Some reliable resources are listed at the bottom of this page.

Priorities. Ask your doctor if there are urgent medical situations you need to be aware of and how to address those immediately should they arise. In the case of Type 1 diabetes, for example, that could include how to recognize and treat low and high blood sugars. You should leave the hospital knowing how to treat any such urgent situations and how to recognize those situations. Ask about side effects from new medications and potential interactions with medications you already take.

Get Organized.

Preparing ahead of time for a doctor’s appointment can be very helpful. All clinicians are short on time. So it is worth thinking about (and writing down) what your most important health concerns are–and try to get those across to your practitioner at the very start of the appointment. You can even send your questions and concerns to the doctor via the patient portal or by fax so they know what you want to talk about even before they walk into the room.

Tips for your doctor’s appointment: keep a notebook.

Start a notebook or folder to collect your laboratory tests, radiology results, bills and your notes from doctor’s appointments.

This is what should go in the notebook that you take to all doctor’s appointments:

• Date of birth
• Allergies
• Emergency contacts
• Health insurance information
• A copy of insurance cards
• Medication list
• List of all your clinicians and their contact information
• Login information for your online patient portal
• Medical history summary
• Copies of recent/important test results
• Advance directives and health proxy forms
• Notepad and pens

Medication tips. Take any medication on time and according to instructions. Get a pillbox. Remembering to take pills is particularly difficult when your schedule changes—and in most people’s lives, schedules change on a daily basis. Pillboxes and timers are good reminders. Patients who take their medication on time and in the right way feel better; and likely heal better. Success breeds success.

Accommodations. Many patients with serious medical illnesses work better with certain accommodations, a protection accorded to those with serious medical diagnoses under the Americans with Disabilities Act. It is better to be proactive and request accommodations up front–not later, when the need is urgent. Accommodations can be asked for not just at work, but also in elementary school, middle and high school or college.

FIND A SUPPORT GROUP

Many patients find comfort and learn by talking with others who have faced similar health issues. Some support groups are better than others. Don’t feel pressured to stay with a group that does not meet your needs. See below for recommendations or contact HEI for suggestions.The two that we recommend below are specifically for cancer patients but there are many others:

• Imerman Angels (imermanangels.org) provides free, personalized one-on-one cancer support between mentors and mentees to provide comfort and understanding.
• Another excellent cancer support group is Triage Cancer (triagecancer.org).

The best part of joining such a group is feeling that you are not alone. These can be amazing communities–ones, perhaps, that you never wanted to be a part of but are thankful for daily.

Build your team. Your team does not have to include the providers who saw you in the hospital or to whom you were initially referred. Build a team of clinicians who will work with you, share your concerns, and who will make you feel like what you are worried about matters and is legitimate. Find people with whom you feel comfortable discussing your symptoms, who can answer your questions and who can explain what to expect as your treatment progresses. Your team must be knowledgeable about your diagnosis. Pulling together a supportive and knowledgeable team makes everything else easier.