The Unthinkable: MS, Death, and Life Expectancy
Last updated: April 2023
It’s time for me to talk about the unthinkable, the topic that is extremely taboo for many of us with multiple sclerosis. I’m talking about the effects MS can have on our deaths and life expectancy. Like many topics I discuss, I got the idea for this by talking with others who battle the disease. Also like most things I discuss, I have a personal connection to it, as my grandfather was taken by MS. This topic is tough for most to talk about. It’s even harder for our friends and family. But just because something is unpleasant, it doesn’t mean we shouldn’t discuss it and inform ourselves, so let’s get to it.
Can MS kill you?
I’m sure many of you have heard that MS is not fatal. People are fond of proclaiming that the disease won’t kill you. I get it, it’s comforting to say, “I have this disease, but at least it isn’t going to kill me”. I guess in the technical sense, that is true. It’s not MS that kills you, it’s complications due to MS that kill you. It’s really all about the language here. People want to say that MS can’t kill.
While technically true, MS can still lead to death. People don’t want to say that, though. I know it’s all semantics, but if a disease causes you a complication and that complication causes your death, can’t we at least admit the role of the disease in that? For example, people who have AIDS (and I am not comparing the diseases, just the language) could die from an infection or other related complication because their immune system can’t fight it off. We still attribute those deaths to AIDS though. It’s something to ponder.
Shorter life expectancy
MS doesn’t technically kill, but research has shown that people with MS have an increased risk of mortality compared to those without it.1 I mentioned before that my grandfather had MS. By the end of his life, he had no control of his limbs and he had trouble breathing. He would constantly get pneumonia because of his MS and that’s eventually what killed him. I still consider it MS that took him from us though, because he wouldn't have had those issues had he not had the disease.
What are some serious MS complications?
As I said, it’s “complications” from MS that end up taking us early. So what are some of these? (this is far from a complete list)
Pneumonia can be a pretty common problem for those with MS. Swallowing problems are common, and they lead to food and drink getting deposited in the lungs. I think pneumonia is a serious problem among the MS community. I’m in my 30s and have already had several bad bouts of it, I’ve even been hospitalized because of it. As I mentioned, it’s also what claimed my grandfather.2
Infections are another common problem. The immobility that many with MS deal with can lead to bedsores, which can cause bad infections. Urinary tract infections are another common affliction that can become deadly if not treated.3
Falls pose a huge risk to those with MS. It’s consistently one of my doctor’s greatest concerns (a concern not at all lessened when I fell through a window last year). Numbness and weakness in the legs can lead to a lot of falls, as can spasms.
Suicide is a big risk. Some will say I shouldn’t include it here, but I disagree. Often, depression and suicide are not treated or given the due diligence that they deserve. We have to stop the taboo around these topics!
Other complications can arise. With a disease that can force inactivity and make regular exercise difficult like MS can, our overall health risks are increased. We need to take extra care of our bodies in order to fight conditions like heart disease and diabetes. Basically, it’s much easier to have an unhealthy lifestyle when you have MS, and that can cause all sorts of complications.
Improving life expectancy
While I hope that I’ve at least shown that MS can have some fatal consequences, there is room for hope. I think the addition of new medications in recent years has really given all of us a better chance at living a good and long life.
Acknowledging that our disease is serious
It’s important to remember to not dismiss how deadly the disease can be. In a world where researchers are fighting for every dollar, I often worry about people not taking MS seriously, and saying “Oh, well at least it can’t kill you” seems like a sure way for that to happen. My point of all this is not to scare people, but to get some admission that this disease can absolutely take your life. We owe that to people like my grandfather, who have passed due to complications with MS and we owe it to ourselves to acknowledge that our disease is serious.
Thanks so much for reading,
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: