What most people do not realize is navigating a chronic illness can be a full-time job by itself. Doctors, pharmacies, and insurance companies…compounded by the ever-changing laws and policies they are required to follow…the nicest thing I can say is it’s a mess.
At one time, I worked about thirty hours per week, tried to make time for my family, and quarterbacked my own healthcare. Needless to say, this did not work out very well. I did not have 100% to give, and I was giving the majority of what I did have to my chronic illness, so all of us suffered.
The most difficult but important thing I did was find a good group of doctors. I called a friend, a medical professional, to ask for a recommendation. Other people to ask include nurses, doctors’ wives, and other chronic patients. Personally, I never had any luck asking doctors themselves. They would refer their golfing buddies, with no concept of their actual ability to deal with a medically complex patient.
When you meet a new doctor, there are several important characteristics you should look for. The doctor should listen to you, show empathy, and put effort into getting a good grasp of your medical history. This may require several visits, and that is absolutely acceptable. Keep in mind the average length of time a doctor is given to spend with you is about fifteen minutes; any time beyond this is pretty much out of the goodness of their hearts.
I am exceptionally impressed with a doctor who will admit when she does not have an answer, and who will then go research to find it. I also recommend avoiding doctors who are intimidated by comprehensive lists and organization. There is a big difference between providing a thorough list of facts and shooting off a long list of possibilities you found on WebMD. The great thing about finally finding Doctor Diva was that when I needed a specialist, she sent me to her (almost) equally smart doctor friends.
Once you have an established relationship with your doctor, you need to make the most of your visits. I have a few tricks. First, jot down your thoughts for several days prior to your appointment, so you do not forget anything. The night before, rewrite your list (or type it up), and make two copies – one for the doctor and one for yourself. This way you can follow along and take notes, and she has a copy for her records. She will be able to pay more attention to you, because she will not have to write down as much. It also allows you to be concise.
After several years of doing this, my doctor will scan my list first, knock out the easy stuff (write requested refills, send flu shot order to the lab), then address the rest as needed. I will include tests and labs I think I need, based on timing or recommendations from other docs. Also ask questions, and since I lost any sense of modestly at least a decade ago, nothing is off limits. I now keep this on my computer, so I can make the necessary changes and print off two copies. This makes it even easier to simply update my med list with any changes, add or subtract new information and questions for the specific doctor, without having to start from scratch each time.
For big appointments, whether because you are extremely ill, dealing with a radical new issue, or seeing a specialist for the first time, try to take another adult with you. Most people recommend this, and I agree. These sessions can be short yet full of information, and it is virtually impossible for one person to digest all of it, especially when in a foggy haze of illness and drug side effects.
I keep all of my medical documents in the cloud, so I can access them from my computer, my phone, my tablet, or even a web browser on someone else’s computer. My husband has access to this folder, so he can do the same. Writing or verbally repeating the same information is tedious and tiring, and it can lead to rambling and forgetting important details. The ability to give a concise and accurate medical history is difficult on my best days…when I am sick, especially going to the hospital, I am usually struggling to make coherent sentences. Handing medical professionals pre-written information takes away a lot of the stress. It is also nice to not have to rewrite the list of prescriptions every week or two.
Never let anyone make you feel less of a person, because most of your time is devoted to doctors’ visits and dealing with insurance companies. The first thing my husband said after he handled it for me for a few weeks was, “Honey, I have no idea how you do this, especially while you are sick. This is all-consuming, frustrating, and I’m not even sick!”