Did you know that about half of people with MS experience depression? MS isn’t just about physical symptoms; it also carries emotional challenges, and depression is one of them. But what do you really know about depression and MS?

It’s widely underreported and misunderstood.

In my latest podcast episode of MS in the News, I explored an article from Johns Hopkins Medicine in which Rehabilitation psychologist, Dr. Abbey Hughes, clears the air. 

Let’s explore their five myths about multiple sclerosis and depression.

Myth #1: Anyone with a disease such as MS should expect to be depressed.

Truth: Each person with MS has an ability to adapt in the face of adversity — this is called resilience. 

Resilience is something that I talk a lot about, and I also do my best to point it out when I see it in members of our community. 

What’s interesting to me is that very rarely does someone see it in themselves. When I point it out, most people say, thanks, but I’ve never considered myself “resilient.” 

My friends, if you are living with a chronic illness and reading this blog, you can officially consider yourself in the resilient hall of fame. 

I say that because it’s very easy to just accept a diagnosis for what it is and tell yourself that all the worst case scenarios are now written in stone for you. 

But the fact that you choose to learn about your diagnoses and seek ways to improve your health, that is the definition of resilient. 

And just in case you’re wondering, you can’t get kicked out of the hall of fame. 

Because by its very definition, resilience is the act of getting back up when you fall down. So if you fall down again, or fall off the bandwagon so to speak that doesn’t mean that you’re no longer resilient, it means that it’s giving you another opportunity to flex your resiliency! 

The article goes on to say that while many individuals with MS may have similar symptoms or experiences, only about 50 percent develop depression that interferes with their daily functioning over the course of their life.

So I hear two things out of that – 50% meaning I have just a good of a chance to not experience depression that affects my daily life. 

Again, time to flex those resilience muscles my friends. 

Dr. Hughes points out that “Resilience isn’t necessarily affected by the severity of MS. Even patients with severe or progressive forms of MS can be quite resilient and do not have clinically significant depression. While depression is common in those with MS, it is not universal and shouldn’t be considered normal or expected.”

Myth #2: People with MS and depression always look and act depressed.

Truth: Depression in MS may look different than how you might expect depression to “look” on someone. 

The article says that “Sometimes, an individual with MS may experience depression as irritability, anger, not feeling like oneself and/or uncertainty about the future.”

When you’re living with an unpredictable disease I feel like you can’t not feel uncertain about the future. 

And many of the symptoms of depression overlap with many symptoms of MS – especially fatigue and difficulty concentrating. 

My neurologist actually has a questionnaire that I fill out at each appointment and several of the questions on there are about depression.

So that can be one helpful way to track your progress, but you can also use a symptom tracker or dairy to track your mood if you feel that would be helpful. 

Myth #3: Depression and grief are the same.

Oh how I love this myth buster SO very much. 

As I’ve shared with you many times before, I was diagnosed with MS just six weeks after my mom passed from cancer. 

I was grieving the loss of my mom when I got my diagnosis and then had the extra layer of grieving the health and life that I just assumed were part of my future. 

So hearing this myth buster, I was all ears! 

They put it this way… 

Truth: “Grief is a reaction to a loss, whether it’s a loss of a loved one or loss of an ability. 

It is understandable and normal for someone who has MS to experience grief in the face of progressive symptoms, such as diminished mobility, vision, flexibility or energy.

As symptoms worsen or flare up, a person may need to use a wheelchair, leave a job or stop driving a car. 

Adjusting to these and other lifestyle changes comes with an understandable grief reaction.”

Dr. Hughes then shares that “An important distinction between grief and depression is that grief is temporary… When treating depression, the focus is often on helping people reduce feelings of hopelessness, worthlessness and, for some, thoughts of suicide. Grief is not typically associated with these feelings, so the focus of therapy is likely to be different.”

Just a side note, I’ve also mentioned on many episodes before how much of a believer I am in therapy. 

Even if you go for a short season in life, it’s so helpful in processing not only life, but certainly a diagnosis of MS and the challenges of living with an invisible disease. 

Myth #4: Visible MS symptoms are the most disabling.

This one doesn’t come as a huge surprise to me living with MS first hand, and it likely doesn’t for you either. 

We know that one of the most disabling symptoms of MS is fatigue. 

You can’t see it but you sure can feel it! 

Well, the article goes on to point out that…

Truth: (But) what may not come up in conversations and can be hard to notice, are mood and cognitive issues associated with MS. 

Emotional difficulties, including depression and anxiety, can often interfere with daily functioning more so than physical symptoms. 

Apathy or anxiety may have more power than muscle spasms or dizziness to hold someone back from enjoying life.

That’s pretty wild to think about but totally relatable, right? 

Myth #5: Fatigue and cognitive dysfunction are not related to depression.

This is another one where I feel it’s super obvious. 

MS fatigue is humbling and can feel quite defeating, as can brain fog, so of course it will trigger our emotions and affect both our mood and our mindset. 

The article actually states that… 

Truth: Fatigue is one of the most common MS symptoms, but it can also be a sign of depression. 

And so can certain cognitive issues, such as poor concentration and indecisiveness. 

MS can mask some of these depression symptoms, making it difficult to diagnose this condition.

In addition to being a symptom of depression, cognitive issues may also lead to or worsen depression. 

MS may affect cognitive functions such as memory, attention, information processing and reasoning. 

Problems with any of these functions may negatively affect a person’s self-image and self-worth.

Dr. Hughes suggests cognitive evaluations as a way to keep track of cognitive changes.

It’s a test that can be performed by a psychologist experienced in working with patients who have medical problems, such as a rehabilitation psychologist or neuropsychologist. 

Dr. Hughes added, “It is often a good idea to get this test done at the first signs of difficulties, as it can provide a baseline for future comparison. This evaluation can also help determine if treatment, such as cognitive behavioral therapy or cognitive rehabilitation, would be beneficial for improving fatigue, mood, and/or cognitive symptoms.”

Just hearing that, my eyes are opened to therapies and treatments that I didn’t even know existed. 

This is why it’s so important that we have these conversations openly about MS. 

That’s why I’m so glad that you’re a member of this community. 

I Want to Hear From You!

I’m curious to know, which myth stood out to you most?

Please share in the comments below.