Chronic Life vs Disease Management

In healthcare today, we (doctors, nurses, billers, health insurance types, academic types) think disease management is the same as chronic life management. Healthcare makes decisions under the umbrella of disease management. This is probably fine for general conversation, but life doesn’t follow a disease management story line. For example, my day-to-day life is pain, sweating, irregular heartbeat, dizziness, tachycardia, multiple joint swelling, numbness, muscle spasms, irregular sleep, nausea, insomnia, bloating, and chronic pain, not how my blood sugar will affect my rheumatoid arthritis management (that’s what doctor appointments are for). This is what I mean when I talk about my chronic life. Remembering to wear underwear without 29 holes in it has the same importance in my life as deciding if the numbness in the palms of both hands will affect my driving so I can go hike or hit the gym. By contrast, my doctor’s job is to anticipate and management of how my rheumatoid arthritis, type 2 diabetes, chronic pain, liver disease, degenerative disk disease, severe osteoarthritis, atrial fibrillation (Afib), and chronic pain will play together so it does not become worse and thus negatively affect my quality of life. My chronic life is now, today, this moment, disease management is the last few months, the next couple of months, or the rest of my life. Too often, we don’t realize the significance of these 2 different time periods until it is too late.

Let’s discuss this difference in more detail for a moment.

Last week I was officially (and finally) diagnosed with type 2 diabetes by my new primary care physician. I have not researched this fully, but from what I understand dad’s side of the family might have been a founding member of the diabetes club. For the last 10 plus years of my life, I’ve showed enough characteristics and symptoms of type 2 that I’ve been tested for it many times, but no doctor would ever make it official. Yes, I’ve been told to watch the number of doughnuts I eat for breakfast or that vegetables would not in fact kill me if I ate one, but my numbers didn’t support a diagnosis until now. Before I only received caution about my diet.

So, because my story did not include considering of being a type 2 diabetic, I’ve never considered my blood sugars when dealing with pain from either my rheumatoid arthritis or degenerative disk disease for example. When dealing with pain, my quality of life and lately, what living in near constant pain would do to my atrial fibrillation (there is some new research indicating chronic pain is a top cause for Afib) were at the top of my mind when considering treatment options like steroid shots. My thought process was, how might we lower my pain levels quickly so I could have more fun than tears in my eyes?

Now for those of you in the rheumatoid arthritis or chronic pain club, you know steroids are a major part of our lives. Steroids are often used to control flares or joint pain by reducing or eliminating inflammation. Although steroids are referred to as the “pred monster” by patients like me, they are excellent tools for eliminating said inflammation. Turns out, steroids are what fellow rheumatoid arthritis and type 1 diabetic described as their “nemesis”. Steroids raise blood sugars, and it can be very difficult to lower them again.  

For reasons I can’t explain, soon after my new primary care physician gave me my diabetes diagnosis, he basically started to yell at me for not considering my blood sugars when I was deciding on whether I was going to utilize steroids for pain management in the past. He seemed to be mad at me, my rheumatologist who I’ve been seeing for 10 years, and my pain management doctor who I’ve been seeing for 14 some years because I did not know that steroids affect blood sugars. Mind you that at this point in the visit my type 2 diagnosis was maybe 10 minutes old. If I follow his logic, I should have been considering side effects for a disease that I had tested negative for on multiple occasions just because I’m my father’s child. In my mind, this is a great example of the difference between a chronic life and disease care by a doctor. I wanted to be in less pain, and quickly. Of course, I wasn’t going to consider diabetes disease management because I wasn’t considered an actual diabetic at that point in my life.

Healthcare is amazing at symptom management when the patient has an illness. We have drugs that can stop cancer while preventing you from ever getting the flu again while providing the patient with enough goodness they don’t have to eat fruits and veggies for a month. The trouble is most of us don’t have an illness, we have multiple illnesses and conditions. As we continue to discover, often some of our other illnesses are caused by the medication from the first illness that wasn’t known about, or the known risk of the med wasn’t statistically significant enough to prevent use, but the patient won the chronic life lottery anyway (they got the side-effect is the point I’m trying to make). Or we are finding that the initial illness can cause 2 or 3 different conditions that we had not considered possible because we have only recently developed sound enough research techniques to be able effectively correlate long-term data to our disease management decisions.

Ready for the big groundbreaking conclusion. Sorry, I don’t have one. Right now, I don’t have an answer to this issue accept to continue to create content about it. I need chronic patients to talk about how symptom and disease management are different, that each effects their quality of life both directly and independently. I need more patient stories about how fighting my rheumatoid arthritis can change my type 2 diabetes path while possibly changing my liver disease so I can better understand this issue as an epatient advocate. I need more chronic patients to walk us through treatment decisions, risk management considerations, while considering time (think life) management decisions. Once this happens, we can all begin to ask how might we solve this issue in the hopes of improving human centered care for all.

Until then, please remember it’s just a bad day but not a bad life.