Mental health and multiple sclerosis

If you have multiple sclerosis (MS), you may look just fine to loved ones and co-workers.

Meanwhile, your vision may be so blurry that you cannot see your computer screen clearly. Or you have trouble socializing because the entire right side of your body is numb or tingling.

“Just imagine how distracting something like that can be,” says Sharon Stoll, a neurologist at Yale Medicine who specializes in MS.

It’s easy to see how these changes can affect your mental health. But MS can affect your mood for a range of reasons, including changes stimulated by the disease process.

Mental health problems can be treated regardless of their cause. You may need medication or talk therapy. Work with your doctor to find what’s best for you.

Can MS cause depression?

Up to 50% of people with MS may develop major depressive disorder at some point. This makes your odds of developing depression three times higher than the general population.

For a long time, doctors believed depression was a common response to the stresses of life with MS. But there is mounting evidence that the disease alters the brain and immune system in a way that affects how you feel and act.

“With more research, more understanding, more treatment, we realized that it’s really part of the disease itself,” Stoll says. “It’s more than just reactive depression.”

Michelle Hill, 40, discovered she had relapsing-remitting MS in her late 30s. She finished a two-year treatment on a drug that targets certain white blood cells. These white blood cells play an important role in MS. So far, the lesions are confined to her brain.

Hill, who was diagnosed with bipolar disorder 20 years ago, says she’s noticed an increase in depression symptoms recently, such as:

• Lack of motivation and energy
• Lack of interest in leaving the house
• Difficulty paying attention to more than one thing
• sleep problems
• Feeling upset or irritable

Hill meets with her doctor, a psychiatrist and psychotherapist. She urges others to do the same but understands that focusing on your well-being takes action.

“You don’t have a lot of energy to give off when you have MS, so you put that energy into getting through your day,” she says. “Mental health is being pushed by the wayside.”

Can MS cause anxiety?

Stoll compares life with MS to the stress of living during the COVID-19 pandemic: it’s unpredictable.

“This big unknown, this is something MS patients live with on a daily basis,” Stoll says. “And part of treating illness — and anxiety and depression — is kind of training[people with MS]through this world of uncertainty.”

For example, Stoll says, lesions on the spinal cord can make your skin look like it doesn’t really exist. This can trigger feelings of anxiety. “Imagine you are standing in a group and talking at a cocktail party while you are holding your stomach to make sure your guts don’t fall out.”

Hill started feeling really bad anxiety “suddenly” a few years before her diagnosis. Her symptoms got so bad that she had to take medical leave from her job. I thought it was stress. But she wonders if it might be something else: the MS hug.

“It’s like you’re in the lap of a tight giant, and you can’t catch your breath. I felt like I was having a panic attack,” Hill says.

As with depression, Stoll says the anxiety may be caused in part by the “reframing and rewiring of your brain” that can occur with MS. But it can also stem from life events. Your doctor can help you tell the difference and find treatment to help manage your most common concerns.

Can MS cause other emotional changes?

Some people with MS also have an adjustment disorder — when you find it difficult to adjust to stressful changes in your life. You are twice as likely to have bipolar disorder than the general population.

Where can I get help for depression and anxiety?

You can start with your regular doctor. They can look for any medications or other health problems that may be causing your symptoms. But your neurologist will be able to give you better multiple sclerosis care.

Ask your doctor to refer you to a mental rehabilitation professional who treats people with MS.

A therapist can help you accept your diagnosis and find ways to directly manage problems. A method called cognitive behavioral therapy (CBT) may help relieve pain, fatigue, anxiety and depression.

Stoll regularly refers people with MS for counselling. Antidepressants can also be helpful. There are some antidepressants that can also treat nerve pain, headaches or sleep problems.

“As an MS professional, I love the two-for-one drugs.”

For Hill, mental health treatment is just as important as annual brain scans and multiple sclerosis medication. But she says her recovery is still in the process of being accomplished.

“Nobody gives you a brochure on how to do these things, like a list of top 10 guaranteed things to make things easier if you have MS.”