How Do You Live Well with Rheumatoid Arthritis when it has a Mortality Risk?
RA has a mortality risk. When it hit 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 doesn’t just make life pretty challenging, but that it can actually kill us. 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 eventually 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?
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Great post, Lene.
Personally, I live with the risk the same way I do with other risks – ie, the cars… By being aware, doing what I need to do to manage the risks as well as possible, and then putting my primary focus into actually living. Because, at the end of the day, there's not much point in putting ALL the focus into managing the risks to the point that no life is being lived, is there?
Exactly! Thanks for putting it so succinctly.
It wasn't easy to get in to see a cardiologist but I pushed for it some years ago. Usually I feel as though I am doing pretty well considering, at least I was till I tripped over a chair and fell on the floor.
At least it was more of a half fall, than a full one.
It's easy to fear falling when you have bad joints
Annette
So true… Glad to hear you finally got a cardiologist on your team.
This is superb, Lene. Factual, compassionate, and eloquent. Thank you for being such a bright light in the often very dark night of this disease.
Thanks so much, Wren. It means a lot, coming from you.
Thank you Lene for openly discussing a topic that many sufferers (and also their family and friends) are often too scared to consider.
I often get told that by talking to fellow sufferers about issues that affect us, that I am 'dwelling too much on the negative' and that 'support groups are unhealthy'. This is usually from the people who have never had a need for a support group in their life.
I agree that we need to look at these things with a balanced perspective. Yes, sometimes we can get caught up too much in our problems but that is true of everyone, not just people with chronic illnesses. I also believe that sticking our heads in the sand and pretending that the issues don't exist is even more unhealthy as we put ourselves at much greater health risks.
I help to run a group called the Young Women's Arthritis Support Group for working-age women with any form of arthritis. I will post a link to your blog there as I am sure our followers will also appreciate it.
Rosemary
It’s all about finding that balance between awareness and if not sticking your head in the sand, then at least pushing it to the back burner so you can focus on life. Thanks for sharing with your support group! Which, btw, is much needed, especially for young women.
You may also like to read a similar post from another blogger.
http://www.radiabetes.com/letter-sent-to-irving-azoff/
I did read that. Rick is awesome.
Love your wisdom. And your special special humour.
Thanks so much!
Thanks for sharing this Lene.
<3
You’re so welcome. i hope it was helpful.
This post hits home with me. I have been hospitalized 3 times since November 2015, one of those was life threatening Streptococcal A Toxic Shock Syndrome with Cellulitis. Suddenly after 32 years after diagnosis of RA my immune system was at its lowest.ive been pretty much off of the meds a biological and methotrexate. After November hospital stay for Pelvic abscess I started back on the biologic, 30 days later I was admitted with Toxic Shock, recovered from that and Doc dropped the biologic and started again Methotrexate. 5 months later admitted again for fifteen days (inflammation across abdomen) with a month of strong antibiotics for 4 weeks after release.This is a new phase for me with RA. Biologics and Methotrexate are off the equation for now. Thank you for your post.
Wow, that’s quite the inundation of really bad things happening. I’m really impressed that you seem to be bouncing back from each of them. Have you heard of Triple Therapy? It’s a combination of DMARDs for RA that together may work as well as a biologic. You can learn more about it here https://www.healthcentral.com/article/what-is-the-role-of-triple-therapy-in-treating-rheumatoid-arthritis/?ap=420
I am aware, daily, of the cardiovacular risks. I’m 6 years older than my husband who has serious cardiovascular disease and just last year had a quadruple bypass. He is so much weaker than before that it is hard to not just cry every time I look at him. My own risks are much lower than his at this point. But we are both at so high risk that one or the other will die in the next few years – or months. So we choose to love each other and just go on living our lives (such as they are). We live in a cocoon of denial – and are only occasionally aware of our risk status. At this point, there is little we can do to ameliorate our risks. We eat as well as we can, get whatever exercise we can, and enjoy each other.
At different times in our lives, different reactions make the most sense. Where you are now, focusing on the life and love you have between you is the most important. Do what you can, but most of all, love.