It's Time to Get Real About Depression and Suicide in the MS Community
Last updated: July 2023
Content note: The following article discusses depression and suicide. If you or a loved one are struggling, consider reading our mental health resources page or calling the National Suicide Prevention Lifeline at 988.
When it comes to multiple sclerosis and other chronic illnesses, we seem to be very fond of talking about some of our symptoms: our difficulty walking, speech problems, our pain, and even our fatigue. It’s time, however, that we get real about our mental health problems. Yes, there are mentions here and there about depression, but I still don’t feel this topic is given the full attention it needs. It’s my opinion that more than any other issue, depression and anxiety have the ability to shut us down - even more than unresponsive or numb legs, speech troubles, or having little to no energy. All of these things are, of course, related, but these mental issues can cause the most suffering.
Stigma around depression and anxiety
One reason I feel a need to write this is the enormous stigma that still seems to surround the topics of depression, anxiety, and suicide. It’s 2016; our society needs to get past that, and the only way to do that is to talk about it and be open and honest about it. These are issues that affect a large segment of the population (even more so for those with chronic illness) and yet, it still seems taboo. I’m not sure I’ll ever understand why, even with all we know today, that people can’t grasp that these issues are just another problem with our body. We don’t usually think less of someone with a broken bone, and we shouldn’t think less of someone with depression or anxiety.
Depression and suicide in the MS community
You’ve no doubt seen many of the stats about depression and suicide before. I took a quick look at the National MS Society’s website and right now, those with MS are 50% more likely to suffer serious depression than those without the disease. The same section says we are 7.5 times more likely to commit suicide than the regular population.1 That statistic is staggering and cannot be ignored. These are stats for those with MS, but I’m sure the numbers are high for other chronic illnesses as well.
Looking at the issue from a personal perspective
I really wanted to discuss this because I’ve begun to realize I have issues here, too. I’ve recently said in conversations with others that depression and suicide need to be talked about more, and we need to do more, and blah, blah, blah. I realized today that I was preaching and that I was talking about this issue but from the outside. I wasn’t being real, if that makes any sense. The truth of the matter is that I myself have these issues.
My instinct is to feel embarrassed
I feel depressed, I get anxious, and yes, even recently, I have thought about suicide. These aren’t things I really share with people, but now I’m sharing them with everyone because I believe we need to talk about all of this. My first thought, my gut reaction (I literally have an uneasy feeling in my stomach typing this) like many, is to be embarrassed. Apparently, I’m a product of all that stupid social stigma as well. But in the interest of trying to break those stigmas, I’m going to ignore those feelings and own up to it.
My experience with depression and suicidal thoughts
Depression, anxiety, and suicidal thoughts. I’ve had them all. I didn’t always have these issues, but the last few years have been tough. Three years ago, I had a major relapse that left me with issues that my body just couldn’t bounce back from. My doctors basically said I was beginning to transition into secondary-progressive MS. I started Tysabri right away and that, for the moment, has apparently halted that transition.
Going on disability at age 36
However, the damage was already done. The demyelinated areas are there, and they can’t be repaired. I was put on disability at the age of 36. Wow, even now, I feel like my heart stops briefly when I say that. 36. I felt like my career as a software engineer was one of the defining things about me and suddenly, it was stripped away. Not even getting into the financial impacts of that, it felt like a part of who I was died. Three years later and that’s still an issue for me, one I struggle with daily.
Changes to my body and my outlook
My symptoms also cause a lot of my problems and I’m sure some of this is true for others as well. I deal with a lot of pain. Let me tell you something, pain changes a person. Being in pain a lot can really influence how you see the world. Not being able to sleep well because of pain and not being able to ever really get comfortable can really give you a sour outlook on life at times. There’s loss, too; I can no longer be as active as I once was, and I struggle with that. It’s hard to think I played ice hockey in college and ran marathons and now, just walking to the bathroom can be difficult. Even if my legs would cooperate, I’d have no energy to do many of the things I once enjoyed. The ever-present weight of MS fatigue would hold me down. Like a lot of people, I see those pictures of “memories” on my social media. I see those and can’t help but think, what happened?
Feeling like a burden
Feeling like a burden is something that a lot of those with chronic illness deal with. The same is true for me. The last thing I ever want is to be a burden. Yes, I know I’m not and I know that everyone will say I am not. But it’s still not easy to avoid feeling that way. Not working and not really being able to drive do a lot to bring on that burdensome feeling I get. A lot of us who suffer from chronic illnesses have this feeling. Whether someone makes you feel that way or you come to it on your own, feeling like a burden is a sensitive and serious issue for many.
Loneliness and isolation
Another issue a lot of us deal with, and I am certainly no exception to this, is the loss of friends. Having a chronic illness is a very lonely situation to be in, but it’s compounded by the fact that, for a variety of reasons, we tend to lose friends. MS can be a great measure for bringing out who your “true” friends are, but that doesn’t lessen the hurt of losing them. Even the friends we still have, we don’t get to see as often. Not being able to go out as much or do the same activities as others can really increase those feelings of isolation. MS can be a very lonely disease, and that absolutely affects our mental wellbeing.
Living with depression is draining
It’s all so draining thinking about it sometimes, but honestly, I struggle even when I’m not thinking about any particular cause. I’ll be upset. I’ll feel like my very soul is being swallowed into a deep and black hole, and I will not know why. I’ll either find myself in the pit of despair or so anxious that my heart is racing, ready to explode from my chest. My wife will notice and ask what’s wrong and more often than not, I don’t know.
Don't tell me to "be more positive"
Here is where one of those people (you know the kind) chimes in with, “You just need to be more positive!” Which, quite honestly, is the most insensitive and hurtful thing to say because the truth about depression and anxiety is that you can’t just change how you are thinking. Telling someone who is depressed to just be more positive or happy is like telling someone with a broken leg to just rub it and they’ll be better. That’s the big disconnect that causes the stigma that we see, and if you think positive thinking will change it, you don’t understand the issue at all. Much of the time, it’s not because of something that has happened in our life, it happens because part of us is broken. Many times that’s the only cause. Part of the brain is injured, and no amount of positive thinking is going to fix that.
As I’ve stated, yes, I’ve thought about suicide. I’ve spoken with many who share my disease and they have, too. Being in pain all the time, feeling like a burden, losing friends, etc. added to the fact that our brains are damaged is quite the combination. I’m sure it’s a much more common thought than most people let on. Who wouldn’t want to escape a lot of that? Not to mention, with feeling like a burden, I know I often want to save the people I care about from having to deal with me. I also know, though, the reason I haven’t is because I know it’d upset my family. Unfortunately, not everyone has the great support system I do, and that’s how we get that staggeringly high number of suicides.
Talking about MS and mental health
I can just imagine the gasp and maybe even tears happening as some people close to me read some of this. Just as I see sad faces when I post other articles about suicide and chronic illness. The thing is, we need to try to control those reactions. We can’t shy away from these topics because that’s what makes them worse. We have to talk about depression, and anxiety, and yes, suicide. That’s the only way we will end the stigma and the only way that we are going to make those high percentages go down. That goes for the medical community, too. Our neurologists, nurses, and general practitioners need to do a better job of accepting this part of the illness. Remember to treat these issues as part of our broken bodies, the same as you would a broken bone or an MS-related spasm.
Breaking the silence
My main goal in all this is to help break down that stigma and to help get the issues of depression, anxiety, and suicide to the forefront. There are a lot of people suffering out there, and that suffering is made worse because they are embarrassed to talk about it. The embarrassment needs to stop. The stigma needs to stop. We need to start getting real about these issues.
Have any of the following helped to reduce your pain? Select all that apply.