MS's Constant Assault on Mental Health
Content warning: The following article discusses depression and passive suicidal ideation. Please know that there are many resources available for support including the National Suicide Prevention Lifeline (1-800-273-8255) and online chat, and the MSAA toll-free helpline (800-532-7667, extension 154) and online chat.
Mental health and MS
As I write this in late May, we are fairly deep into Mental Health Month. While that alone would seem like a great reason to write this, that’s not why I’ve chosen to do this today. After 20-plus years of being diagnosed with multiple sclerosis and about 6 or 7 of being disabled from it, I often struggle with my mental health. I’m writing about this right now because I am having a really hard time at the moment. So, I figure, what better time to bring it up? Maybe this won’t even turn into something I submit, but if I do, I’m sure there’s someone else out there that is having similar struggles and could benefit from it. If there is, then I hope they read this and realize they aren’t alone.
Feeling alone is a great place to start. Despite what my social media might show you, I don’t get out much. I don’t really drive. I don’t have a job anymore. My number of friends has diminished extensively. I’ve no significant other, no children of my own. The family members I talk to are few, and they don’t live near me. I don’t have many reasons to leave the house, even if I could. None of this is because of a pandemic, it’s simply the situation I am in and have been in for a while now. I spend a significant amount of time by myself, and while I do have moments when that’s enjoyable, I’d almost always prefer to be around others. I’m a social person and crave real, in person, conversation with other human beings. I always have.
Struggling to find a purpose
Having so much time to myself gives my lesion-riddled brain too much time to think, which is a huge part of my problem. It’s not just that I am alone, it’s that I’m not really occupied either. Sure, I come up with distractions, like when I write like this or when I’m walking my dog. The longer I’m alone, the more my brain starts to catch on and realize those are just diversions. With no meaningful activity, like a job, I start to feel like I lack a purpose. This struggle to find a purpose is something I’ve written about before and it still haunts me. It’s the number one threat when it comes to my mental health and it’s been plaguing me since I had to leave my career. I can temporarily convince myself that I’m being useful, but no matter how I do that, I tend to come back to the thought that I serve no real purpose and, on days like this, that I’m less than helpful, I’m actually a burden.
Depression and anxiety
Days like this are extremely difficult. Many of my MS symptoms aren’t that bad today. My pain is a bit more bearable than normal, I’m moving OK enough, and while I wouldn’t say I feel good, I at least don’t feel as bad as I often can. While that should be a reason for rejoicing, it often becomes a wake-up call to my brain that I really don’t do anything or have a purpose most days. It may sound odd, but the days where I am feeling physically better than usual are often my hardest days from a mental standpoint.
Anxiety about not doing enough
I am simultaneously filled with anxiety from feeling like I should be doing something and depression from knowing that I rarely ever do anything and that this is what my life has become. Thinking about what I was and what I could have been are thoughts that pop up in these moments and they are simply crushing to me. I know how fortunate I was, how good I had it. I lucked out when it came to a solid upbringing and great education. To think about what I should/could have been is extremely tough. So too is seeing where current and former friends and family are with their lives.
Passive suicidal ideation
It should be no surprise that I’ve thought of and talked about suicide (and we can’t shy away from those discussions, we simply can’t). I don’t really want to end my life, but I don’t really always want to be alive anymore either. I’d still say I have a decent life compared to many; I have plenty of good times, and I have a curiosity about what the future holds. That said, I’m not super attached to being alive. That’s a hard thing for some people to understand, but I have a feeling it’s a thought that will really ring home to some folks. I wouldn’t commit suicide, but I wouldn’t really fight hard if my life was in danger either. The idea of going to bed one night and not waking up doesn’t scare me; in fact, some days I think that’d be good (it’s a considerably better thought than the more likely scenario: waking up again with my MS having progressed with new or worsening symptoms).
I actively get help for my mental health
Now let me again be specific, I’m not planning to commit suicide - do not worry about me, don’t feel bad for me. I simply sometimes am not in love with the idea of being alive. It’s a unique place to be in when it comes to mental health (experts often think of this as “passive suicidal ideation” because I don’t actively want to end things). It’s still a serious issue, but not in the realm of seriousness that I need to be watched or anything like that. I do actively get help for it, too. In fact, getting that help is what has made me want to discuss this topic.
Depression should not be a taboo topic
Depression and suicide continue to be stigmatized in our society. In fact, I guarantee that a number of people have recoiled in horror when they read that last paragraph. He doesn’t always want to be alive?! How can he say such a thing, not to mention putting it out there for all to see?! Well, that reaction is exactly why I’m writing this. It’s such a taboo topic that people hide it and when you hide that kind of thing, people end up suffering in silence. If we can work to normalize the discussion around these topics, we can hopefully get more people the help they need. We NEED to broach this topic, the stats around depression with MS are staggering (someone with MS is 7.5 times more likely to commit suicide that the average person).1
Reaching for life preservers to keep me going
Even though I get help regarding these thoughts and feelings, that doesn’t mean that everything is fixed. Mental health can be an ongoing battle for most people. I have good days and bad, with many more good than you probably think from reading all of this. When I’m having a bad day, and my emotions feel like they're going to drown me, I do the same thing I’d do if I were actually drowning - I reach for a life preserver. Something to keep me going for that day or moment. Maybe it’s an episode of a show I like, or building a new LEGO set, or watching something funny on YouTube, or reading a favorite book or just walking my dog. I have lots of small things I use to distract me, to keep me going until I feel better. Sometimes that’s successful, sometimes not so much. Relying on these little life preservers though is no different than using a cane to help you walk when your legs are having trouble. Depression is a part of this disease the same way that mobility problems are and it’s okay to use aids to help.
So, what do you do if you are feeling depressed? Please talk to your doctor. If you are feeling suicidal, call the National Crisis Hotline at 1-800-273-TALK (8255) or text "ANSWER" to 839863 for help. Please remember that you aren’t alone, that other people (as you can see just by reading this) feel just like you. Other people struggle, it’s OK to struggle, it’s much more common than you think. Help is out there though and you’re strong enough to get it.
Does listening to music help lower the severity of your stress or MS symptoms?