Depression and Suicide in MS

young woman starting out a window blankly

20 May 2024 | ~14:05 Engagement Time


Roz Kalb , Psychologist

Reviewed By

Samantha Domingo , Psychologist

Special thanks to our sponsors, Viatris & EMD Serono.

Depression and suicide are just hard to talk about. They frighten us, so we want to push them away. Or they make us feel vulnerable and threaten our sense of control. Sometimes they make us worry that others will think less of us if we talk about them. Whatever the reasons you may have for putting depression and suicide “out-of-sight and out-of-mind”, it’s time to look them in the eye. They are problems of epidemic proportions in today’s world, among people of every age, and they have a particular relevance for people living with MS. Let’s take a look at why that’s true.

Depression is a Common Symptom of Multiple Sclerosis

As many as one in two people with MS will experience a major depression in the course of their lifetime. Changes in the neural connections in the brain of people with MS, along with uncertainty about the future, increased isolation, reduced independence or function, difficulties with accessibility, and the attitudes of others, help to explain why so many people with MS experience depression. Major depression is a clinical term that refers to a very specific list of symptoms that last all day for at least two weeks.

Symptoms of Depression

The diagnosis can be made when a person experiences five or more of these depression symptoms, including one or both of the first two:

  1. Feeling sad or having a very low, depressed mood
  2. Having a loss of interest or pleasure in activities that were once enjoyed
  3. Experiencing changes in appetite, including significant weight gain or weight loss unrelated to dieting
  4. Having trouble sleeping or sleeping too much
  5. Experiencing loss of energy or increased fatigue
  6. Feeling or acting slowed
  7. Engaging in purposeless activity –  inability to sit still, pacing, handwringing
  8. Feeling worthless or guilty
  9. Having difficulty thinking, concentrating, or making decisions
  10. Having recurrent thoughts of death or suicide

Diagnosing Depression in MS

Diagnosing depression in MS can be more challenging than in the general population for several reasons.

  • Depression symptoms overlap with other common MS symptoms (loss of energy, being or feeling slower, sleep difficulties, difficulty with thinking and decision-making) – making it more difficult for people with MS and their healthcare providers to make the diagnosis of depression.
  • More than 50 percent of people with MS experience a milder form of depression. It’s so common, in fact, that we may fall into the trap of thinking, “Well, of course I’m depressed. I have MS!” But this simply doesn’t have to be the case.
  • People are often reluctant to discuss mood changes with their neurologist or primary care provider. The provider may not ask, or there’s too little time in an appointment to bring up this sensitive topic. Or the person with MS is concerned they are complaining or showing weakness. Sometimes, a person with MS may not even realize they are depressed – and a family member or friend may need to bring it to the attention of the provider.

Early and Ongoing Screening is the Key to Diagnosing Depression in MS

Being on the lookout for depression is the best way to overcome this barrier. People with MS, their support partners, and their providers need to focus attention on this important symptom of MS.

Depression can occur at any point in the course of MS – even as a first symptom. The current recommendation by mental health professionals who specialize in MS care is for depression screening at the time of diagnosis and every six to 12 months thereafter.

There are many reasons for this recommendation. Depression is known to:

  • Cause indescribable pain
  • Sap precious energy and motivation
  • Reduce self-esteem and self-confidence
  • Make other MS symptoms like pain and cognitive problems feel worse
  • Interfere with daily functioning
  • Impact relationships and communication
  • Reduce a person’s quality of life
  • Increase the risk of self-harm, suicidal thoughts, and suicidal behaviors

If your MS provider or primary care physician is not routinely asking about your mood, bring it up with them and request regular screening.

In the meantime, here are two options you can pursue yourself.

  1. Ask yourself the following two questions:Over the past two weeks, have I felt down, sad, or blue all day, every day?Over the past two weeks, have I felt uninterested in things that used to give me pleasure (e.g., time with family or friends, hobbies, work, sex, good meals, favorite TV programs)?If you answer YES to one or both of these questions, you may well be experiencing depression – and we encourage you to talk with your healthcare provider about it.
  2. Take a free, confidential screening for depression (or a range of other mental health conditions) at Health America uses validated online screening tools that are easy to complete. The site scores your responses and sends you a confidential report you can share with your healthcare provider.

Suicide in People With MS

The term “suicidality” refers to a range of behaviors, including having suicidal feelings and thoughts, thinking about ways to end one’s life, and ending one’s life by suicide.

The suicide rate is two times higher in people with MS than in the general population. This is frightening to think about, but also forces us to take on this issue in an intentional, planful way – involving people with MS, their family members, and their healthcare providers.

Studies have shown that many people with MS have passing thoughts about ending their lives. Most often, these thoughts are not followed by self-harm. But certain factors do seem to increase a person’s risk:

  • Severe depression
  • Hopelessness
  • Accompanying anxiety along with depression
  • Feeling isolated
  • Lacking coping strategies that would make it easier to get help
  • Use of alcohol or drugs to self-medicate the painful feelings.

Statements like the following – made to family members, friends, and healthcare providers – need to be heard and taken seriously. They don’t necessarily indicate the person is suicidal. Still, they do tell us that the person may be depressed, in great emotional distress, or wondering whether everyone would be better off without them.

  • “My life is empty; I hate my life”
  • I can’t do anything anymore, so what’s the point?”
  • “I just want this all to be over”
  • “I’ve had a good life, but what’s left for me now?”
  • “I don’t want to be a burden”

For people with MS and the population at large, access to firearms significantly increases the risk of suicide. One of the best things we can do to protect people who are depressed and feeling suicidal is to remove firearms from the house.

Given the profound impact depression can have on a person’s life and the devastating risks of suicide, our goal is to make it feel comfortable and acceptable for people to talk about their moods.

Finding Help For Depression

Sometimes, getting started is the hardest part. Here are some conversation starters to help jumpstart the conversation:

Your MS provider or PCP

  • I’ve been feeling very down lately and that’s just not like me. Can you refer me to someone I could talk to about this?
  • I’ve had some very painful thoughts lately that are scaring me – about being a burden…feeling hopeless about my future… and not seeing much point in staying around. Could you help me find some help?
  • I wanted to let you know that my partner – your patient – seems to be really depressed right now. I don’t know whether she will mention it to you, but I’m very concerned for her right now, and I’m not sure how to help.

Your partner or family member

  • I know I’ve been irritable and down lately. I’m not sure what’s going on, but I could really use your support. I’m feeling kind of hopeless about things at the moment. Can we talk?
  • I just don’t have the energy to do anything right now. It’s not just regular MS fatigue—I feel drained and empty for some reason. Maybe you can help me figure out what’s going on.
  • I know you’ve noticed that I’m not myself lately. Could you come to the neurologist with me and help me describe what’s been going on?

A Friend

  •  I know I’ve been hard to connect with lately. I just can’t seem to get myself out of this funk I’m in and I could really use your support. Maybe you can help me figure out what’s going on and what I could do about it?

Addressing Your Family Member With MS Who Appears Depressed

  • I can tell you’re really down lately – do you want to talk about it?
  • Lately you’ve been really touchy and irritable, which isn’t like you at all. Are you having a tough time? Can we talk about it?
  • I think we should talk with your neurologist about your mood – would that be ok? It’s really changed a lot over the past month or so.

Addressing a Partner Who Appears Depressed

  • I’ve noticed that you’ve seemed pretty down and distant lately. I know life has been challenging for both of us and I’m just checking to see how you’re doing, Could we talk about it?

Managing and Treating Depression

Treatment for depression is offered by different types of mental health professionals:

  • Psychiatrists are physicians who specialize in the care of people with mental health problems. They primarily do medication management, although some psychiatrists also offer talk therapy. It is common for a person to be seeing a psychiatrist for medication while seeing a psychotherapist for ongoing talk therapy.
  • Psychologists with doctoral degrees (PhD’s) diagnose and treat mental health problems. They primarily provide talk therapy but are also licensed to provide medication in some states. Psychologists often offer individual, group, couples, and family therapy.
  • Licensed professional counselors and social workers also provide psychotherapy for individuals, couples, and families.

Treatment strategies differ according to your needs and preferences. Three strategies are recognized as being effective in the treatment of depression:

  1. Medication Management
    Antidepressant medication can be a very effective tool in depression management, particularly if you are severely depressed, have suicidal thoughts, or are unable to carry out your daily activities. Getting the depression under control is often the first step before talk therapy can be helpful. For people who are less depressed or who are uncomfortable taking medication for it, talk therapy has also been found to be very effective.
  2. Talk Therapy
    Cognitive behavioral therapy is a form of talk therapy that has been shown to be as effective as medication for treating depression. This form of therapy is based on the idea that psychological problems are based, in part, on faulty or unhelpful thought patterns and learned patterns of unhelpful behavior – and that people can learn more effective thought patterns, behaviors, and coping strategies. A CBT therapist focuses on the present and works to help the patient become their own therapist over time.
  3. Physical Activity
    Exercise has been shown to elevate mood. They are an invaluable adjunct to any kind of mental health treatment.

Getting Help From a Mental Health Professional

Your relationship with a mental health professional is very personal. Like finding the right home to live in, the perfect-fitting shoes, or the care that best fits your needs, it can take time to find what you’re looking for. Accessibility, cost, and convenience also play a role.

Here are some tips to help you:

  • Ask yourself what you’re looking for in a therapist.
    Do you want someone with a certain style or philosophy of treatment? Does the therapist’s gender matter to you? Are you looking for treatment for a particular symptom, such as depression, anxiety, stress, or sleep problems? Or are you looking for someone to help you with relationship issues, work challenges, future planning, or some other life issue?
  • If possible, meet with a few to see who might be the best fit for you.
    Let them know what your goals for treatment are, and ask them what their orientation is and how they might approach your issues with you. These meetings are a little bit like a first date during which you try to get a sense of the other person, figure out whether you feel comfortable with them, and wish to trust them with your issues. Don’t worry if it takes a few of these meet-ups to find someone who feels right for you.
  • Check your health insurance
    Review how mental health is covered, find a list of therapists in your insurance network, check whether televisions are covered, and find out what your share of the cost will be.
  • Consider the option of a therapist with expertise in MS or chronic illness
    There are many resources available to you to find someone with expertise in MS or chronic illnesses.

    • Mental health referral from your MS provider or primary care physician
    • PSYPACT shows whether you live in a state that allows telepsychology across state boundaries. A therapist who is registered with PSYPACT can have virtual psychotherapy sessions with any person who lives in a PSYPACT state. This is the perfect option for those who would prefer virtual psychotherapy or who don’t have access to therapists near where they live or work.
    • The National MS Society (1-800-344-4867) provides referrals to mental health professionals with experience and expertise in their area.
    • The American Psychological Association has a Psychologist Locator to help you find a psychologist near you.
    • Psychology Today has an international Therapist Finder that provides a list of qualified mental health professionals when you enter your city or zip code
  • Be sure to discuss the therapist’s fees.
    Ask what insurance they accept, whether they offer a sliding scale, and what payment arrangements, if any, they would be willing to make with you.

Managing your mood is as important as managing your MS or treating any of the other MS symptoms that interfere with your function and quality of life.

Ask yourself how you’re doing. Take your “emotional temperature” from time to time. Ask those close to you how they think your mood has been lately. Life with MS is challenging enough without trying to do it under the weight of overwhelming depression and/or anxiety. There are no awards for “doing it all myself” or “pulling myself up by my boot straps” or “toughing it out.” But there are rewards for taking care of your mental health.