Living With Primary Immunodeficiencies
ADULT ONSET
"Many adults who were born with apparently normal immune systems
go on to develop a primary immunodeficiency late in adolescence
or even in adulthood. Just as with pediatric patients, the positive
side of having a diagnosis is that the uncertainty is over and you
can now learn about your disorder, achieve a better state of health
as a result of treatment, and make the necessary adjustments to
your lifestyle. It is important to distinguish between the adult
onset primary immunodeficiencies and AIDS. Because some primary
immunodeficiency disorders have their onset in adulthood they are
sometimes called "acquired" immunodeficiencies even though
they are not caused by the virus that causes AIDS.
The most common immunodeficiencies to affect adults include: the
antibody deficiency diseases (Selective IgA deficiency, Common Variable
Immunodeficiency, Immunoglobulin G subclass deficiency, and X-linked
Agammaglobulinemia) and less commonly disorders of the phagocytic
cells (Chronic Granulomatous Disease) and disorders of the complement
system.
In most cases, the well informed patient, working with attentive
medical staff should be able to pursue a career and live a full
life. The newly diagnosed adult must face questions and problems
which have already been faced by children who have grown up with
these disorders. Feelings of self-pity and fear are quite normal.
It is important to realize that you are still the same person, but
that you have to come to terms with your diagnosis and treatment
and live with them as you go about your life.
An adult with a primary immune deficiency disease has all of the
medical problems that a child would have, and yet by the definition
of adulthood, is supposed to be responsible for his or her life,
career, financial planning, and the future of his or her children.
Obviously, this can bring various degrees of stress into a family.
It is important to discuss with your physician these aspects of
an illness, just as much as one would discuss a physical problem.
Sometimes just expressing your fears can have a therapeutic effect.
There are a variety of ways to help keep your frustrations and
anxieties to a minimum. You may simply require some time to discuss
these feelings with your partner or spouse, understanding friend
or health care professional. Many people are helped by meeting with
others in a support group setting. Your country's primary immunodeficiency
organization can give you information about a support group. Learning
as much as possible about an illness is one very specific way to
guard against confusion about the illness itself. You will want
to make it very clear to your friends and family that it is not
AIDS.
One of your main challenges is in maintaining your school or work
attendance. You will need to fit your treatment into your schedule.
Receiving your infusions of gammaglobulin from Home Care providers
may be more helpful, or learning to administer your own infusions
at any time of day or night is especially convenient for an adult
student or working person. Also, career choices that provide flexible
hours or a home-based work environment make life much easier for
patients with frequent illnesses".
If school or work is stressful, it would be helpful to learn skills
for dealing with stress. You might try meditation, visualization,
yoga, or Tai Chi, and the library and bookstores offer many books
regarding relaxation skills and stress management.
Laughing can divert your attention, cheer you up and help you put
things in perspective. Research even shows that it can be good for
you physically. It causes the release of powerful natural pain relievers
in your brain...it can help get more oxygen to your blood...11 Look
for opportunities for laughter - comedy movies and plays, the antics
of animal pets, expressing your sense of humor, and making sure
you are in the company of cheerful people as often as possible.
Seek activities that are fun. Do not forget the benefits of exercise.
If your energy level is low, mild exercise can be invigorating.
One university student with primary immunodefiency felt very fatigued
until a long bicycle ride rejuvenated him! Remember also the benefits
of good nutrition.
Malabsorption, however, which sometimes accompanies primary immunodeficiency,
creates other problems. People who have recurring intestinal problems
and cannot eat solid food lose social contacts because they have
a low energy level and are uncomfortable participating in events
focused on eating. Much in our society is based on eating - holiday
gatherings, picnics, dining out for dinner, etc. How can a young
man invite a young woman out for dinner? How can a young woman with
the problem accept? How much fun is it to sit with family or friends
at a table laden with food and listen to them comment about how
delicious everything is? The result is that people with malabsorption
may withdraw from social interaction and gradually fall into a solitary
life. This can become a lonely solitary life, especially for a teenager
or young adult, unless that person makes great effort to participate
in other forms of social interaction.
You should actively participate in your own treatment, but this
is nearly impossible during an illness, so you need an advocate
or care giver. This could be your spouse or partner, another family
member or friend, someone to help communicate with your doctors,
provide care, and give you emotional support by boosting your morale.
When this illness passes you will once again be strong enough to
assert your authority and be more in charge.
"You may experience a feeling of loss - loss of friends and
experiences you can no longer keep up with, loss of trust in your
body, and loss of peace of mind because you must focus on your health
condition and management".12 One young man who experienced
this said, "If you find yourself in a ditch, you get out of
it." He 'got out of it' through discipline and perseverance,
working hard at taking responsibility for improving his health through
nutrition supplements, various forms of exercise, meditation, and
the pursuit of his special interests and talents when he felt better.
A man in Germany with hypogammaglobulin anomaly and malabsorption
expresses his feelings about his illness this way - "Because
of all the demands on me from this illness, I have to make an effort
to remain in good spirits. Those who are rarely spoiled by life,
treasure their moments so much more even if those moments are numerous.
As long as I have my eyesight I can take great pleasure in the beauty
of nature and of art. Moreover, the opportunities I have to hear
music bring enormous joy. And also, in spring and summer, I delight
in the ensemble sounds of the birds. All of these things have provided
great support to me and have given me the will to live and the necessary
energy for self discipline."
You must rely on your normal coping methods and devise new ones
to confront the changes that have occurred in your life, and reevaluate
your lifestyle to meet the challenges you face now. Try to learn
to take life as it comes, not in anger but with patience. Primary
immunodeficiency is part of your life, but not all of it.
"A true handicap is what we don't do with what we have,
not what we can't do with what we don't have." 13 |
