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Emotional Roller Coaster
Copyright 1995 Health ResponseAbility Systems, Inc.
If someone you love or care about has multiple sclerosis (MS),
you and your loved one are riding the same unpredictable,
emotional roller coaster.
Chronic disorders such as MS do not just effect the individual
with the disease. It can also effect spouses, lovers, friends,
parents, and children.
Multiple sclerosis and other potentially disabling, chronic
disorders can carry with them times of crisis. For the
individual with MS, learning to adjust to the disease usually
isn't easy. For those who care about a person with MS, adjusting
may be equally difficult. It's an on-going process filled with
lessons.
MS does not ruin or end relationships: People do. How
relationships are affected depends on the individuals involved.
It takes two to maintain a relationship, no matter how well the
individual with MS copes.
There is no cure (currently) for MS. And scientists have not
discovered a magical solution to the many challenges and stresses
that MS can put on a relationship.
The damage that MS may cause to your loved one's nervous system
is beyond your control, and beyond the control of your loved one.
You and your loved one do have control, however, over how the
disease effects your relationship.
While the following does not provide an exhaustive list of
solutions to the many challenges that you and your loved one are
likely to face, perhaps it can serve as a foundation upon which
to build a strong and lasting relationship.
When an individual is diagnosed with MS, he or she begins
traveling along an emotionally rocky road that often includes the
following stages, though not necessarily in the order presented:
Not only will you go through the above stages, you may also
experience additional guilt or frustration. It's natural to feel
that you want to do everything you can for your loved one. It's
natural to want to "take the disease away" and to feel powerless
over your inability to do so.
Learning to recognize and admit your feelings can be crucial to
your relationship and to providing the support that your loved
one needs.
Information & Education
Following diagnosis and disclosure, it may be helpful to learn as
much as you can about MS. It is an unpredictable disease with
different courses and different phases. Seeking accurate, helpful
information may be difficult, but worth the effort.
Often, the information you find will be misleading: Wheelchairs
and disability may be presented as the future when, in fact, many
individuals with MS remain independent.
Possible signs, symptoms or complications (such as bladder
infections) are often presented as inevitable outcomes, when, in
fact, not every individual with MS experiences the same symptoms
or outcomes.
Don't rely on just one source of information and learn to
question statistics and the media. Television sound bites should
not be considered expert information, nor should sensational
magazine articles.
The Multiple Sclerosis Society offers patient and public
information brochures on a variety of topics. Your public
library is likely to have entire books on MS or books with
chapters on MS.
Progressive or specialty bookstores are also likely to carry
books on MS. If they don't have any on stock, as the staff to
conduct an electronic search for books about MS.
Local hospitals can also be a valuable resource. Many hospitals
offer reading or lending libraries to the general public, and
some hospitals provide information or literature searches on
specific topics.
Communicate With Your Loved One
It's normal to want to protect your loved one from emotional
stress and burdens. Attempting to hide or deny your own personal
fears and frustrations may seem like the way to protect your
loved one.
Hiding or denying your feelings, however, may actually contribute
to problems. Eventually, one or both of you are likely to become
resentful.
Learning to communicate openly and honestly, and learning to
share your concerns can strengthen your relationship. Sometimes,
it may be helpful to join a support group or to seek individual
or couple's counseling to help strengthen your communication.
Let Go Of Fear & Learn To Play
Concerns about finances, the future and the possibility of
physically or emotionally hurting your loved one are likely to be
encountered.
Many people believe that it is loving and caring to stop doing
activities that he or she enjoys, if his or her partner or loved
one can no longer participate in the activities.
The individual with MS needs levity and play. Instead of
stopping activities, be creative. Talk with your loved one about
ways to adapt and ways for him or her to become involved.
Brainstorm about the possibilities. Trust that your partner will
tell you if the activity or event may be too strenuous. Trust
that -- together -- you can identify back-up plans and
alternatives.
If there are activities that your loved one simply cannot
participate in, you may want to consider re-evaluating your
recreational priorities. Re-evaluating without your loved one's
input may lead to resentment. Once, again, communication may be
the key.
Financial Burdens
Financial concerns and burdens can put a severe strain on any
relationship. It's important to remember that your partner and
the MS are not necessarily the causes of the financial burdens.
Your partner is not to blame, nor should you blame yourself. The
future is often vague, even in the absence of MS.
Many organizations offer financial assistance to individuals with
chronic illnesses. If financial burdens are a concern, you and
your loved one may want to contact your local Social Security
office, a member of the clergy, your local chapter of the
Multiple Sclerosis Society, your local United Way of America
organization, or you local information and referral service.
Keep Laughing
It's important for both you and your loved one to remember that
multiple sclerosis may take away a lot of things, but it -- in
and of itself -- cannot take away your sense of humor.
Learning to laugh at perplexities, fears, yourselves and life can
go a long way toward keeping your relationship alive and healthy.
You're Not Alone
Remember that you're not alone in your struggle with MS and its
impact on your loved one and your relationship. Support is
available.
You may want to contact your local chapter of the Multiple
Sclerosis Society or talk with a professional mental health
expert. You may also want to check the message boards in the
Better Health and Medical Forum. The message boards allow
individuals with similar challenges to solicit and provide
information and support to one another.
Document ID: lhf00220
