How Do You Live Well with Rheumatoid Arthritis when it has a Mortality Risk?

Earlier this week, we heard the news that Glenn Frey of The Eagles had died from complications of rheumatoid arthritis (RA), and other conditions. It was an uncomfortable reminder that this disease with which we live has a mortality risk. How do you live with that? Is it possible to create a good life with RA knowing that statistically, there are a number of things that might cut your life expectancy short?

The Facts. Ish.

Imagine I’m holding your hand. This part of the post is a bit scary.

Have you heard of the mortality gap? This term describes the shortened life expectancy of people with RA.

RA is a systemic disease. Inflammation affects not just the joints, but also other systems in the body, including organs, tendons, and the vascular system. The mortality gap has a lot to do with the effects of inflammation on those systems. We have a higher risk of heart disease and stroke, due to the impact of inflammation on the heart. We have a high risk of pneumonia, and other lung complications. There is the impact of RA in the neck. And then there are those wonderful rare side effects of the meds we take to control the inflammation.

The advent of the Biologics and their ability to cause remission, or much lowered disease activity, has had a significantly positive impact on the mortality gap. Many studies show that the mortality gap is closing. A recent study showed that in people diagnosed since 2000 (when Biologics came on the market), the risk of death from cardiovascular disease is now comparable to that of the general population. The reason for this is theorized to be Biologics.

Because controlling the inflammation controls the damage caused to joints and organs. Imagine that.

And then there is the other new study showing that women with RA have a 40% greater risk of death from cardiovascular and respiratory causes (hat tip to RA Warrior for the info).

And we’re back to freaking out.

via GIPHY

Managing the risk

How can such different results coexist?

The study showing that women had such a dramatically increased risk of death used data from the Nurses’ Health Study, which has followed 100,000 nurses since 1976. For most of the 40 years since the study started, there were no treatments for RA. I believe that the results indicating 40% greater risk of death reflects the impact of uncontrolled RA inflammation. Compare that to the study of people who have been diagnosed since the year 2000, whose risk of death from cardiovascular causes is the same as the general population.

The difference between the two study populations is, I'm sure, access to effective treatment, greater awareness of the systemic impact of RA inflammation, and a switch in treatment approach that utilizes an aggressive approach to controlling the disease.

Still freaked out? I don’t blame you. Very few of us are the ideal RA patient, diagnosed after 2000, responding beautifully to treatment, with few effects of the disease.

So what do you do?

Two things.

One, you get on top of your disease, and your health in general. You make sure that you are informed about your disease. You stay on top of your doctors so you don’t miss all the regular preventative care in the midst of the overwhelming RA diagnosis. You get in to see a cardiologist and other specialists, make sure you have an annual physical, and have detailed discussions with your family doctor about the systemic impact of RA, and what to do to manage the risk. And then you have serious discussions with your rheumatologist about staying on top of monitoring risk factors and disease activity, and get treatment that suppresses RA inflammation.

And then you live

And then you move on with your life.

You can’t live paralyzed by awareness of the risk factors and the many ways RA can contribute to your death. You don’t spend your life paralyzed by the fear of being hit by a car, despite the fact that you have a one in 11,000 chances of that (much higher than your chance of winning the lottery!).

Well, you can live like that, but it’s not much fun.

When I was a child, my parents told me I had two choices in life: I could cry or I could laugh. We all have that choice. You can spend your life focused on the terrible parts of this disease — and there are many — or you can shift your focus to that which gives your life meaning and joy.

This is not denial, because you will have those ongoing discussions with your doctors, and you will read the information that scares you. And after you read that information, you will spend several days being very aware of this fact about RA that is so very serious. Maybe even have a cry about it.

And then you will find a way to live with it. Of being enough aware of the symptoms you need to look out for that you’ll notice if you experience them, but not enough that this awareness takes over your life and all you see is risks.

You find a way to laugh. To live your life with joy, to notice all that is wonderful and bright and sunny. To laugh in the face of the disease, to make the most of this life you have been given. And when you die, as we all do regardless of the reason, you will be able to look back on your life and pronounce it a good one.

How do you cope with being aware of the mortality risk?