Most
of us associate grief with the loss of a loved one. However, grief may
also occur as the result of having a chronic illness like multiple
sclerosis (MS), in which a person loses various physical and/or mental
abilities.
Whether you are newly diagnosed or have been living with
MS for many years, it's important to understand that grief is a
completely normal and natural reaction. By understanding your grief, you can help yourself to cope.
When understanding your grief with a diagnosis of MS, it's perhaps best
to consider two phenomenon from which grief stems: loss and
vulnerability.
LOSS
Grief is a reaction to loss, and there
are so many losses that accompany MS. Besides a potential loss of
physical abilities such as walking, balance, and vision, there is a
potential loss of cognitive skills, such as thinking, memory, and
concentration abilities.
MS fatigue, or lassitude, is often
described by those with MS as "having the flu," or "dragging around an
anchor." This feeling in itself is another loss, as it represents a
diminishment of your energy, muscle strength, and brain power.
Furthermore, MS can contribute to the loss of friendships, other
meaningful relationships, and even employment. You lose your physical
and emotional well-being, sense of self, and the way you once imagined
your life.
Besides a feeling of loss, other symptoms or signs of grief in MS may include:
Denial
Isolation
Anger
Depression
Anxiety and frustration
Fear or worry
Irritability
VULNERABILITY
While everyone's MS experience and symptoms are unique, a vulnerability
to the disease itself—the lack of control—exists for everyone. This "MS
vulnerability" means that you never know exactly how you will feel from
day to day or the unpredictable course your disease will take. This can
be a source of tremendous grief.
As with loss, MS-related
vulnerability can lead to deeper vulnerabilities. This could be because
you are hiding your disease, or you are not letting yourself dream or
strive for life goals because of your limitations.
EXPERIENCING GRIEF
Grief is a complex experience, but a normal one for those who have a
chronic illness like MS. While there are five stages of grief, know that
not everyone goes through each stage—if you do, the stages do not
necessarily progress through the order in which they are listed.
Everyone experiences grief differently.
Instead of focusing on
the nuances or restraints of this model, use it as a source of comfort
or a context for understanding your feelings. For example, if you are
feeling anger for having MS, you can be reassured that anger is a normal
and natural emotion in the grieving process and that you are not alone.
In addition to the fact that there is no rigid manual or model for
grief, the timing for how long grief lasts varies from person to person.
For many people with MS, grief is more of a chronic, up-and-down
process—your feelings may compare to the grief you experience when a
loved one dies, and it may be a drastically different feeling.
Again, there is no right or wrong way to grieve. Some people with MS
report that they grieve with each new MS relapse that arises. Others
report that they grieved in the beginning when they were first
diagnosed, and then later when a major MS-related disability arose, like
losing the ability to walk or work.
GRIEF vs. DEPRESSION
It's important to understand that grief is different from clinical
depression, although "depression" is considered one of grief's five
stages.
The key distinguishing factor is that with grief, a person's
sorrow should not be all-consuming and it should resolve over time. In
addition, other symptoms like weight loss, agitation (seen by others in
how you react, move, and speak), feelings of excessive guilt, or
thoughts of suicide are indicative of possible clinical depression and
not grief.
If you are experiencing any symptoms of depression, be
sure to see your doctor for an evaluation. Depression is common in MS
and can be a symptom of MS itself and not just as a result of the
stressful factors MS places on your life.
COPING
While
right now, your grief may feel like a huge weight on your shoulders, a
nauseating ache in your stomach, or a dark rain cloud that never leaves
you, be reassured that grief does get better with time for the vast
majority of people.
In addition to letting time pass, there are
things you can do to heal yourself as you grieve. While not an
exhaustive list, these strategies can help you develop self-compassion
and build resiliency—two attributes that will help you to cope with the
losses and vulnerabilities imposed on you by MS.
-Keep a journal to record all your thoughts, worries, fears, and frustrations.
-Try to exercise each day to release natural endorphins, even if it's just a long walk with a friend or pet.
-Indulge in small comforts like grabbing a cup of coffee with a friend or watching a favorite movie.
-Surround yourself with loved ones and/or consider joining a support group, like your local chapter of the National MS Society.
-Engage in mind-body therapy like mindfulness meditation or yoga.
-Change your way of thinking and living by learning and embracing positive psychology.
-Consider occupational therapy to build self-confidence and independence.
-Seek out guidance from a grief counselor or self-help group.
While most people associate grief with losing a loved one, it's
perfectly normal to grieve a diagnosis of MS, as well as the "losses"
brought on by having MS. These losses may be physical (e.g., loss of
mobility or energy) or cognitive (e.g., loss of mental prowess), as well
as mental or emotional (e.g., a diminishing sense of well-being and
identity).
TREATMENT
Grief is a normal reaction—so coping
with or managing your grief is probably a more appropriate term than
treatment. When coping with your grief, it's important to consider the
severity of your symptoms.
For instance, if you are feeling so
anxious or sad that you are having a hard time going to work or taking
care of household chores, then it's time to see your doctor. You may
need treatment—medication and talk therapy—for clinical depression or
generalized anxiety disorder.
On the flip side, if you are
feeling irritable or anxious here and there (meaning it's not extreme or
persistent), engaging in healthy coping strategies may be
useful—journaling, exercising, joining a support or self-help group, or
trying out a mind-body therapy, like mindfulness meditation.
A FINAL WORD
Grieving is a normal, albeit difficult, process. When related to MS,
it's a process that often repeats itself with each new symptom or
disability. Try to be gentle with yourself while you grieve, and
continue to embrace your emotions instead of repressing them. If your
grief is worsening or preventing you from performing your daily routine
for two or more weeks, please see your doctor. While you may seek out
guidance from a support group or counselor for managing your grief,
depression requires the care of a mental health professional.
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