Managing a Chronic Illness

Originally published in "Scleroderma Voice," 2002 #1

Dealing with a chronic illness on a daily basis is a challenge in itself, not to mention adding the additional stress of juggling your medical care.

Every day I have conversations with people from all over the country. They share with me their frustrations in trying to coordinate visits to three or more physicians, therapy, diagnostic and lab tests, and multiple medication changes.

This scenario does not even include trying to balance family issues.

If this story sounds all too familiar, keep in mind you are not alone in this daily struggle! There are ways to stay organized. I would like to offer you some simple tools that could ease your stress and help you make the most out of your doctor appointments.

Stop Me if You've Heard This One Before

Let's see if this scenario sounds familiar.

You have been sitting in a crowded waiting room for a while, and now the hands on the clock show a time well past your scheduled appointment.

After what seems like an eternity, you are finally led to an examining room, where again you wait for an extended period of time.

When the doctor finally arrives, you feel relieved—but the time he spends with you seems far too brief. After all, it has been 3–6 months, or longer, since you last had a visit. You have so much to talk about!

Unfortunately, all the questions you wanted to discuss with the doctor seem to flee away, and you can hardly remember a single one. The discussion goes in a different direction than you had planned.

Later you arrive home with a new prescription, unsure what good it is supposed to do you, and how long it will take for these good things to happen.

Now the questions you had for the doctor filter back into the forefront of your mind. The whole experience seems like a vicious circle, and leaves you feeling bewildered.

Tips for Patients

First let me say that none of this is meant to criticize physicians, by any stretch of the imagination.

Keep in mind that certain physician specialties—rheumatologists in particular—are in short supply. As a result, your doctors may be dealing with overloaded patient schedules in an attempt to accommodate as many patients in need as they can.

This may mean that visits with your physicians are not as long as you would like.

It is all the more important that you make the most out of your visits by being the best patient that you can be!

Keep a Notebook with You for Easy Reference

Every patient under the care of a physician should keep a tablet or notebook handy to jot down questions or concerns that arise between visits with the physician.

Just before a visit, take out your list of issues and prioritize it. Which of these concerns are most important to you?

Number them if necessary, to keep them straight.

On the day of your appointment, take that list with you and keep it in your hands for easy reference. Many patients have a great deal of anxiety related to their doctor's appointments, making it difficult to keep a clear head. The list will serve as a written point of reference, a cue card if you will.

Be Sure to Set Your Priorities

Depending on the number of questions and concerns you have, please keep in mind it may not be realistic to expect your doctor to address every single one during the brief appointment time you will have together. You must be reasonable in your expectations.

So try to number your priorities. Think about getting answers to the top three to five questions on the list, as a starting point or goal for the visit.

Depending on the types of questions that you ask—obviously if they lend themselves to quick, concrete answers the process will go quicker—you may end up being able to ask additional questions.

However, if your questions are open-ended and do not lend themselves to a simple answer, you may not even get through the first few.

If you do not get through all your questions, please do not see this as a failure. Putting things in perspective, realize that your previous appointments may not have been as effective as this one. Look at the appointment as a victory, and consider other resources to find the answers you want.

Your Nurse Is a Valuable Resource

Don't forget your physician's nurse as a valuable resource for information about your care. Nurses are a key part of your healthcare team. Nurses can give you information that may add to or clarify the discussion you had with your physician. They may also be capable of giving you written instructions or literature to help you to put all the pieces of the puzzle together.

Nurses work hand-in-hand with physicians to provide you with the best possible care. They are an important resource for you.

Keep Accurate Medical Records

Another way to make the most of your appoint ments is to keep accurate medical records.

I realize you may be under the care of multiple physicians. Just trying to keep all of their names straight may be a challenge.

You can organize your physicians' names, addresses, specialties, and phone numbers, etc., with other pertinent medical information, in a notebook—or better still, in your computer where you can make updates as needed.

Before an appointment you can make copies of your relevant files, such as medica tions, to share with your physician.

Create a Document that Covers All the Basics of Your Medical Situation

Create a basic medical reference document for yourself. This can be a very valuable tool, not only for your own guidance, but also for your family and the medical professionals you deal with.

This document will also serve as your emergency medical information. Make sure to carry a copy in your purse, and that your loved one or caregiver has access to a copy in the event you are not capable of speaking for yourself. Some people choose to keep a copy on the refrigerator so it is easily visible.

What Information to Put in Your Personal Medical Document

This will be a completely individualized process, and you should not feel there is a right or wrong way to do it. Please keep in mind that the following is a suggested format. You can tailor this to fit your special needs.

There are also software programs available for the purpose of keeping accurate medical records. Use the search words "software for personal medical history" on your favorite Internet search engine.

You may also find preprinted books for the same purpose.

Here is my suggested format.

Your Name, Address, and Phone Emergency Contacts

Medical Insurances: Include Primary/Secondary with all necessary account numbers.

Physician List: Be sure to include specialty, address, and phone number.

Medical Conditions: Examples: CREST syndrome, seasonal allergies, asthma, Sjögrens Syndrome.

Medication List: It is imperative that it include the most up-to-date dosages and frequency. Examples: "Acetaminophen 500 mg, 2 tablets, every 4–6 hours as needed." Don't forget to list any over-the-counter vitamins, supplements, or herbal remedies you may be taking. Note: Be sure to discuss all vitamins, supplements, and herbal remedies with your doctor before starting to use them, so he can warn you of any potential interactions with your other medications. You may want to keep a separate list of medications that you have taken in the past but are no longer on, and the reasons they were discontinued. Example: "Methotrexate was discontinued due to abnormal lab values."

Allergies: List all allergies to medications, tape, topical preparations such as iodine, and any foods. You should do this in bold red letters so it cannot be missed by anyone on your healthcare team.

Surgeries/Procedures: Include major surgeries as well as scopes and biopsies.

Laboratory and Diagnostic Testing: You may want to keep a record of when you had your last pulmonary function tests, electrocardiogram, blood work, etc.

Over time, you will find the tools that work the best for your personality type, as well as the personality type of your physician. It may be a trial-and-error process. Remember, there is no single best way to manage a chronic illness. This article is a starting point.

I sincerely hope you have found the suggestions in this article helpful. Please use them as tools to make the most of the time spent with your doctor, and to help you become the best patient you can be!