The Shocking Number of Ways for People with MS to get Depressed and What To Do About It

By J. Lamar Freed, Psy.D.

Everybody gets the blues and almost everyone understands when someone says, “I’m kind of down today” or “I’m a little depressed.”  Those of us with MS have a higher chance of knowing this first hand.   But sometimes it steps beyond “down” to downright depressed and for us, this is a complicated matter.  The number of ways we can get depressed might shock you.  Fortunately there is also help.

The entity that psychologists call “clinical depression” goes beyond a few bad days. To be clinically depressed you have to have symptoms from a long list, including, but not limited to: depressed or irritable mood; reduced interest in pleasure and activities; significant weight loss or gain; insufficient or excessive sleep;  unusual agitation or, alternatively, complaints of fatigue or loss of energy; feelings of worthlessness;  inappropriate guilt; diminished ability to think, or an inability to make decisions; and finally and perhaps most dangerously, recurrent thoughts of death or interest in/plans for suicide.

The problem with this list for people with MS is that it overlaps with symptoms MS can produce, particularly symptoms produced by fatigue.  This makes it easy to misdiagnose MS symptoms for symptoms of depression.  What is to blame?  MS reduces energy.  So does depression.  Depression reduces the ability to experience pleasure.  So does MS lassitude.  MS can cause weight loss or gain either because of difficulty eating, or because of increased sedentary behavior. MS can cause both too little or too much sleep.  MS fatigue can make people sluggish physically and mentally, making decisions difficult.  Even suicide rates for people with MS go beyond the population baseline.

Research says fifty percent of people with MS get major depression.  So when we have to cope with MS in real life, it is critical to learn how to distinguish between the temporary or recurrent emotional symptoms of MS from the signs of a full blown depression.

Sometimes with MS the first signs of the disease are the symptoms that most resemble depression.  People I’ve chatted with in MS chat rooms have sometimes objected when their neurologists won’t consider a diagnosis of MS until they’ve “passed” an evaluation by a psychologist or psychiatrist in order to rule out depression.  But, given that depression is far easier to treat than MS, any sane neurologist would rather find depression than MS.  Having a mental health professional involved early in the diagnostic process does no damage and could prove valuable.

While MS is not depression, it can certainly make people depressed.  Those of us with MS have often endured remarkable personal and social losses because of this illness:  job loss; loss of favorite activities or hobbies; the desertion by friends or generally reduced social activity.  Even divorce is more frequent for people with MS.  Like one wife said:  “I didn’t sign on for this.”  Even the mere threat of losses like this is enough to depress many of us in the early months and years after a new diagnoses.

Losses like these can depress people who don’t have a chronic, possibly debilitating disease like MS.  This complicates things.  As one person put it, “Just because you have MS doesn’t mean you won’t get sick.”  With the right genes, family history and personal trauma’s any one of us can get depressed unrelated to MS.  Just as with colds and flu, an independent episode of major depression is a nasty complication.

But with MS it’s more complicated.   With MS, depression can come when areas of the brain related to the regulation of mood are damaged, resulting in irrational mood changes.  These mood changes can range from depression to anger to euphoria. In the context of the real life circumstances of a person with MS, these emotions may make little sense, as though they come from out of the blue.   If we expect depression to resemble the ‘normal’ depressions anyone might get, we will look for ‘normal’ causes of depression.  Any one of us might blame events in the environment for these irrational changes.  This is dangerous.  Blaming a spouse, boss, family member or some unrelated event for a mood change that comes only from random damage to the brain can lead to painful consequences  There are enough stresses on our social support networks already.   For us it is particularly important to carefully evaluate the cause of any emotion.  Getting a coach — a therapist, counselor or other dispassionate and reliable advisor — will likely be valuable, particularly in the early years of diagnosis, before you understand the impact MS has on your emotions.

But wait.  It’s more complicated still.  Depression can also be caused by the medications we are given for our symptoms. There are now over ten medications used to treat the underlying cause of relapsing-remitting MS, several of which have been associated with depression.  We can also get depressed or agitated from medications used to treat the symptoms of MS.  This means that it is important to talk to your doctor about any change in mood and review the impact of the drugs you are taking, weighing the cost of their side effects with the benefit of their treatment effect.

To top it off, fatigue — something most people with MS experience — can cause a temporary pseudo-depression that looks and acts just like a regular depression.  If your poor self esteem, hopelessness, demoralization, irritability, or even self destructive feelings happen only for a short period of time, and go away with a good night’s sleep or solid day of rest, your depression might simply be fatigue.  Like with our sense of balance, or increased numbness, sometimes people with MS use changes in their mood as a sign that they need to slow down and rest.

Researchers have puzzled over the questions of how and why MS  and depression overlap to such a great extent.  For any one of us, however, this question, while important to note, is less important than the question of how we treat it.

Treating depression in any of its forms is almost always helpful. Unlike MS, there is a large range of effective things that can be done.  Medications work about seventy percent of the time.  Psychotherapy or counseling is equally effective, but it can not only help with the symptoms of depression, but also help distinguish what kind of depressed symptoms we have and how best to cope.  For regular depressions psychotherapy can have an effect that lasts far beyond the number of sessions it takes. For MS related depressions, therapy can reduce painful symptoms as well as reduce the damage MS does to personal and family life.  Sometimes medication and psychotherapy are combined, and, if you are lucky, you will find a physician/therapist team who have worked together before.  

Family, couples and group therapies can also be helpful. MS is an illness that effects the whole social system.  Acknowledging and discussing the impact on marriages and family life can go a long way to prevent or repair depressing rifts in relationships. 

Depression is rarely easy, often devastating, and it should always be taken seriously. No one who is depressed should be deprived of treatment. Yet, there are barriers.

The greatest barrier to getting treatment is the stigma those of us with MS experience toward our own depressions.  Grouchy and irritable people with MS can deny our feelings or minimize our distress.  We might feel personally attacked if someone suggests counseling.  Some sub-cultures consider visiting a psychologist a sign of weakness, even when they might not blink twice about a golf coach, a personal trainer or getting advice from an accountant or a lawyer.  When faced with extraordinary personal difficulties, there is no shame in seeing a professional about how to manage your emotions.

Financial barriers also exist. We often already have significant financial burdens.  Even though insurance covers psychotherapy, the cost of mental health co-pays can add up.  Some of us without insurance coverage have to pay for treatment out of our family budget.  Finding out what these expenses will be can present a problem in a changing health care environment.  Sometimes the MS Society can help with these things.  Most chapters help with finding therapists,  and some chapters subsidize treatment costs.  Others offer therapeutic support from MS Society staff.  Calling 1 800 FIGHT MS connects people with MS to the local MS society, where information about what is available can be found.  Many psychologists, or other counselors, help patients find their benefits.  They may also reduce their fees for financial hardship, or help find reduced-fee services. 

Sometimes it’s hard to find a mental health professional who understands MS.  MS Society recommendations may help with this.  But, don’t be afraid to ask a therapist about their experience with MS.

Learning to understand what your depressed or depression -like symptoms mean and getting help to manage them is always worthwhile. While any single treatment may not be effective, persistence in finding the right combination of psychotherapy and medications is almost always effective.  Treatment may not get rid of depressed symptoms completely, but it will at least reduce symptoms and might prevent or reduce damage to the relationships you have with  people you love.

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