How To

Part of our ongoing series on life with CFS

People with Chronic Fatigue Syndrome are all too familiar with prescription medications and supplements. There is no cure for CFS, so all we can do is try to manage our symptoms. Like many patients, I have taken medications for a variety of symptoms, including pain, sleep, and IBS. Most people with CFS are very sensitive to medications, so dosages must be carefully managed and changes must be made slowly. Recently, I needed a written refill for one of my medications. Here is my "How To" guide to getting a refill from a doctor:

1. Call medical assistant, requesting that written prescription for your essential medication be waiting at the front desk the next day (since you have another doctor's appointment in the area).
2. Go to office and discover the prescription is not waiting for you.
3. Try and stay calm as medical assistant tells you she did not get your message because she was out of the office the day before, and no one covered her phone.
4. Wait as assistant speaks with doctor about prescription.
5. Control frustration when assistant tells you that doctor will not write prescription for your essential medication because you were a "no-show" at your last appointment.
6. Correct medical assistant, pointing out that you had rescheduled that appointment because you had no one to drive you on the day in question.
7. Wait in examination room while assistant asks doctor to come speak with you.
8. Control anger when assistant reports that doctor said, "Tell her I do not run a walk-in clinic. She can't come in off the street and get a prescription. She can make an appointment to see me on Monday."
9. Agree to provide assistant with phone number and fax number for mail order pharmacy, so that attempt can be made to secure refill that way.
10. Go home and count how many doses of this essential medication you have on hand.
11. Reduce dose of essential medication in attempt to stretch out what you have left.
12. Call assistant every day to check on status of the refill request.
13. Start looking for a new doctor.
    

There are so many things wrong with this recent encounter with my doctor, and I won't bother to point them out. I'm sure you can figure out why I am angry.

But I actually think that I am lucky. Why? I am fortunate to have prescription coverage, so that when I eventually get the refill I will not have to pay hundreds of dollars for the medicine. I am fortunate to live near a city that has other doctors to choose from. Many people with CFS are not as fortunate. Less than 20% of the people who have CFS have been diagnosed, so the vast majority of people are not getting help for their symptoms. Even patients who have been correctly diagnosed struggle to keep health insurance (if they have it to begin with). The chances of a person with CFS getting the correct diagnosis from a doctor who believes them and has the knowledge to treat symptoms appropriately? Not good for most people.

I have to remind myself of that, so I can keep my outrage in perspective. Because how I really feel is mistreated, insulted, and angry.