What You Need to Organize to Effectively Manage a Serious or Chronic Illness

By Sarah P. Welch and Margaret D. Smith, MD

A diagnosis of a chronic or serious illness is life altering. It is entirely normal in the days following to feel a bit numb, not to mention out of control, overwhelmed and lost. But your ability to get back a sense of equilibrium is critical to effectively managing your disease. As a practicing Internist and Rheumatologist for the past 35 years, Dr. Smith has observed that those who take immediate steps to get themselves organized to manage their illness, rather than the other way around, are the most successful. Why? Because when you have the essentials organized, you are able to focus your energy and attention on things that truly matter, both medically, and almost more importantly, emotionally.

We have compiled the critical components to organize for success. Some people find it effective to put together a binder or notebook, but organize these things in whatever way works for you.

Line Up an Advocate

Nobody is an island. Having someone that you can count on to be your supporter during critical meetings with doctors or when your are hospitalized is essential. It doesn’t matter whether that is a spouse, relative, friend or professional caregiver. What matters is that you are not alone as you go through the treatment process.

Keep a Medical Summary

You will likely interact with lots of different specialists during your treatment, all of who will ask you about your medical history. Some times you will be too sick to remember everything, or even to relay the information. In those instances it is good to have a brief medical history that your advocate can provide to the medical staff caring for you. Include diagnoses, medications, allergies, important surgeries and dates, hospitalizations and dates, and relevant family histories.

Track All Medicines

There is almost nothing more important to keep organized than your medicines. Keep an up-to-date record of each medication you are on, the dosages, and side effects – and any time you meet with a new physician, give them a copy of the list. Let your advocate know where the list is just in case. In addition, we strongly recommend that patients buy those plastic pill organizers. Just the simple act of putting each of your pills in the dispenser for the week ahead is a powerful reminder and makes you less likely to forget one or get them mixed up.

Organize Your Research & Questions

In this day and age it is very easy to gather information about your disease, treatments for it and the latest research related to it. By all means get informed. That said, pay attention to the source – all information is not equal! Gather relevant research and keep it in a way that makes it easy to refer to it. As you do research, you will naturally think of questions to ask your doctors. Keep a list of questions to ask so you don’t forget them. Your treatment requires a partnership between you and your physicians. In that spirit, they want to make sure your questions are answered…within reason. You don’t want to exhaust the goodwill and energy of your doctor with hundreds of unnecessary questions either.

Get Critical Care Medical in Order

This certainly includes a living will and if you wish, documentation of your desire for treatment limits, such as Do Not Resuscitate (DNR). There are quite a few end of life treatment specifications that you should consider beyond a DNR: intubation, feeding tube, IV fluids, and antibiotics are examples. The more you know your limits the less stress you and your loved ones will face at the time those decisions need to be made.

Prepare a Master Calendar

Treatment often involves lots of appointments to see specialists, get scanned, or have procedures done. Don’t wing it and hope you will remember everything. Get yourself a master calendar if you don’t have one and get in the habit of sitting down at the beginning of the week to go over it and ensure you have things organized, especially transportation needs. Paper calendars or agendas are great because they are so portable. Digital ones, especially ones that are portable (iPhone or Blackberry versions) are great too because you can send electronic invitations to others for important appointments so that they can keep track as well.

Organize Regular Ways to Recharge

Make sure you regularly focus energy and attention on recharging your batteries. Humor is one of the best medicines out there. So is being needed. Clip articles, poems, or cartoons that tickle your funny bone and keep them in your notebook. Start a blog, get regular manicure/pedicures, or schedule time to really be with children or grandchildren. What you do doesn’t matter so much, just that you do it regularly.

Dr. Margaret Smith is the Program Director for Internal Medicine at St. Vincent’s hospital in New York City, is Professor of Clinical Medicine at New York Medical College, and a former member of the Board of the Arthritis Foundation.