If you have multiple sclerosis (MS), you may look completely fine to your loved ones and colleagues.
Meanwhile, your vision may be so blurry you can’t 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 is,” says Sharon Stoll, DO, a neurologist with 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 mix of reasons, including changes spurred by the disease process.
Mental health issues are treatable no matter what’s causing them. 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 get major depressive disorder at some point. That makes your odds of depression about three times higher than the general public.
For a long time, doctors thought depression was a common response to the stress of life with MS. But there’s growing evidence that the disease changes the brain and immune system in a way that affects how you feel and act.
“With more research, more understanding, and more treatment, we’ve realized it really is part of the disease itself,” Stoll says. “It’s more than just a reactive depression.”
Michelle Heil, 40, found out she had relapsing-remitting MS in her late 30s. She’s finishing up a 2-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 limited to her brain.
Heil, who was diagnosed with bipolar disorder 20 years ago, says she’s noticed and uptick in depressive symptoms lately, such as:
Lack of motivation and energyLittle interest in leaving the houseDifficulty paying attention to more than one thingSleep problemsFeeling down or irritable
Along with her neurologist, Heil sees a psychiatrist and a therapist. She urges others to do the same but understands focusing on your well-being takes work.
“You don’t have a lot of energy to give when you have MS, so you put that energy toward getting through the day,” she says. “Mental health gets pushed back to the wayside.”
Unmanaged depression can make it harder to start or stick with your MS treatment. It also raises your odds of other health issues, such as:
Inflammation and immune system problemsBlood vessel diseasesHeart diseaseSuicidal thoughtsDeath for any reason
Tell your doctor if you have symptoms of depression. Get medical help right away if you think you might hurt yourself.
Can MS Cause Anxiety?
Stoll compares life with MS to the stress of living through the COVID-19 pandemic: It’s unpredictable.
“That big unknown, that is something that MS patients live with on a daily basis,” Stoll says. “And part of treating the disease — and the anxiety and depression — is kind of coaching (people with MS) through this world of uncertainty.”
For example, Stoll says, lesions on your spinal cord can make it seem like your skin isn’t really there. That can trigger feelings of anxiety. “Imagine standing in a group and talking at a cocktail party and you’re holding onto your stomach to make sure your insides aren’t falling out.”
Heil started to have really bad anxiety “all of a sudden” a few years before her diagnosis. Her symptoms got so bad that she had to take medical leave from her job. She thought it was stress. But she wonders if it might’ve been something else: the MS hug.
“It’s like you’re being put in a giant tight bear hug, and you can’t catch your breath. It felt like I was having a panic attack,” Heil says. “But more than likely, I was having a flare-up and that’s how it was presenting.”
Like with depression, Stoll says anxiety may be partly caused by the “reworking and rewiring of your brain” that can happen with MS. But it could also stem from life events. Your doctor can help you figure out the difference and find a treatment to help manage what worries you most.
Can MS Trigger Other Emotional Changes?
Some people with MS also have adjustment disorder — when you have a really hard time adapting to stressful changes in your life. And you’re about twice as likely to get diagnosed with bipolar disorder as the general population.
You or your family may notice that you get moody or angry really fast. That might happen because of changes in your brain, stress, or mood issues like depression.
Heil says she has a hard time controlling her emotional reactions. “When I get upset about something, I get so upset that I basically can’t talk or function,” she says. “It’s like my brain short-circuits and I just start crying. I have an incredibly short temper.”
Less commonly, MS brain lesions can cause pseudobulbar affect (PBA). “It’s inappropriate emotions,” Stoll says. “Somebody is crying for no reason, then minutes or an hour later they’re laughing and they’re ecstatic for no reason or with minimal stimuli.”
PBA can seem like depression, mood swings, or bipolar disorder. But it tends to come on more suddenly than a mood disorder. Some people compare their outbursts to a seizure. Talk therapy isn’t likely to help, but there are medications for PBA.
Where Can I Get Help for Depression and Anxiety?
You can start with your regular doctor. They can look for any other medications or health problems that might be causing your symptoms. But your neurologist will be able to give you better MS-related care.
Ask your doctor to refer you to a rehabilitation psychologist who treats people who have MS.
A therapist can help you accept your diagnosis and find ways to manage problems head on. A method called cognitive behavioral therapy (CBT) may help ease pain, fatigue, anxiety, and depression.
Stoll regularly refers people with MS to counseling. Antidepressants can also be a big help. And there are some depression medications that can also treat nerve pain, headaches, or sleep problems.
“As an MS specialist, I like medicines that are two for one.”
To Heil, mental health treatment is just as crucial as her yearly brain scans and MS medication. But she says her wellness is still a work in progress.
“Nobody gives you a handbook on how to do this stuff, like a top 10 list of things that are guaranteed to make things easier if you have MS.”