Sclerosis and Your Emotions
by Mary Eve Sanford, PhD, and Jack H. Petajan, MD
STRESSES OF MS
to the emotional stresses that apply to anyone with a chronic illness,
there are some characteristics of MS that create special emotional
of a definite diagnosis
MS may be a lengthy process. Physicians may not have enough information
to make a definitive diagnosis, even when MS is a very real possibility.
This is due to the erratic nature of the illness and the fact that no
single specific medical test exists to confirm or rule out MS.
For some people, a
diagnosis after months or years of symptoms is a relief: “At last
I know what I have.” For others, it comes as a terrible shock. Both
reactions are entirely normal.
when a diagnosis is made, uncertainty isn’t over. The course of
MS is always unpredictable: People living with MS are aware that their
symptoms can improve or suddenly get worse at any time. Unpredictability
may be somewhat easier to deal with if it is anticipated—if people
make alternative plans, “just in case.” Discussing one’s
or expected future with a neurologist may also help ease some fears.
When chronic illness
is diagnosed, some people think of the future in statistical terms, saying,
for example, “I have a 50 percent chance of this or that.”
In one’s mind, such predictions soon become fact. But only the present
is real. No one can truly predict the future. Furthermore, new treatments
for MS make past experience unreliable. The future is unknown and today
it is full of hopeful signs.
invisible symptom factor
such as fatigue and weakness are invisible. They can occur without a person
showing obvious signs of illness. When this happens, family and friends
often expect too much from the person with MS. MS fatigue is frequently
perceived as laziness or lack of initiative. Under such pressures, it
is not uncommon for people with MS to doubt themselves.
Sharing these feelings
with others who have MS and learning their coping strategies can be very
helpful. As one person with MS said, “Don’t let others ‘should’
decisions about treatment
of “disease-modifying” drugs have been shown to limit the
number of relapses, or attacks, to limit the number of lesions, or areas
of damage, seen by MRI within the central nervous system, and may slow
the progression of MS. The National MS Society Medical Advisory Board
has issued a Disease Management Consensus Statement advising that most
people who have a definite diagnosis of a relapsing form of MS should
begin treatment with one of these drugs as soon as possible. The Consensus
Statement is available from Society chapter offices or online at: main.nationalmssociety.org/.
This good news about
treatment options poses a new challenge to people with MS. The benefits
of these medications are sometimes hard to see as the drugs may have little
effect on the way people experience daily MS symptoms. But people who
stay with their treatment will be doing all they can to minimize the long-term
progression of their disease.
AND THE MIND
effects of MS
least half of all people with MS notice some changes
in their mental abilities or cognitive function. These might
include problems with memory and problem solving, as well as difficulties
processing information quickly and using language.
person may have trouble comprehending information that is presented
too rapidly. These changes can interfere with work, social life, and
There are many ways
to cope with these problems. Some people make lists of things to be done
or remembered. They allow more time for demanding tasks. They accept some
help from others. Some people find it helpful to visualize what’s
on tomorrow’s agenda. Most of all, people learn a sense of proportion
about daily life. In other words, they don’t sweat the small stuff.
can reduce fatigue and increase attentiveness. A neuropsychologist can
test cognitive functioning to determine where the problems lie and suggest
specific strategies for coping more effectively.
swings and MS
with MS sometimes express emotions
in an exaggerated manner. A person may laugh or cry more easily than before.
A sad comment may cause tears. A joke may induce uncontrolled laughter.
These exaggerated emotions can occur because of MS changes in the brain.
The medical term is “pseudobulbar effect”.
People with MS may
also experience abrupt mood changes. They may go from calm and happy to
upset and angry on a hair trigger. These rapid mood swings, sometimes
called “emotional lability”, can also be traced to MS changes
or they can be triggered by medications, such as high-dose steroids.
to recognize that abrupt changes in mood or inappropriate emotional responses
are very likely to be MS problems. Medications can be effective for some
people. For others, counseling and coping strategies prove useful. An
open discussion with health-care professionals and family members may
also calm some of the stress such reactions can cause.
People who have a
history of clinical depression or bipolar disorder (in which there are
swings from depression to excitement and back) should discuss this with
their physicians even if the disorders appear to be under control. The
symptoms of these disorders can be exaggerated by MS or its treatment
and it may be necessary to avoid or modify some MS medications.