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I am 18 years old and I was diagnosed
with lupus at age 7. After 11 years of illness, I can't even
remember what it feels like not to have it. Lupus, a chronic
autoimmune disorder, and I start every day feeling like I have
the flu. Some days it lasts only a few hours and I can carry
on with a fairly normal routine of going to school and socializing
with my friends. Sometimes it doesn't subside at all for days
or weeks or months at a time. And this is only one symptom of
the complicated disease, lupus.
Influenza season is here again
and most people dread the thought that they might succumb to
it. Everyone knows what it's like: the muscle and joint aches,
the fever, the fatigue that makes you want to stay in bed forever,
and that horrible all-over-sick-feeling that flu is known for.
Flu sufferers can console themselves that at least this feeling
won't last forever; they will likely feel better in a matter
of days. But what if it did last forever? How would that change
their lives? Many lupus patients face this challenge.
With lupus I don't know how I'm going to feel from minute to
minute, because that's how fast it can change. I might be sitting
in class or talking with friends when suddenly I feel incredibly
sick. Sometimes it feels like the room starts to spin, my vision
blurs, I feel nauseated and the pain in my head can be overwhelming.
This is the start of a lupus migraine and there is no warning.
It can happen anywhere, anytime, and when it strikes, it's terrifying,
not only for me but for those around me.
I have to deal not only with
the migraine itself and how to get home safely, but the embarrassment
of becoming sick in front of my friends or teachers or strangers.
Sometimes I will suddenly get hives all over my body and feel
sick all over, or my eyelids and face will swell as if I had
just been stung by a bee. Other times I will suddenly feel so
exhausted that I can hardly move. I may get localized pain in
one joint or I might hurt all over. I can get chest pain that
makes it hurt to breathe, or severe abdominal pain.
Usually I have a good memory
and learning new things comes easily. When my lupus is active
I can't get my brain or my body into action. Learning new things
becomes a struggle and I forget many things I already knew. This
is not only frustrating, it's also very frightening. The unpredictability
of lupus is one of the greatest challenges lupus patients face.
I can never depend on being able to do something I plan or commit
to. I am often unable to attend school or get to work.
Overwhelming fatigue is one of the hallmark symptoms of the disease
and although the level varies from day to day, it never goes
away completely. I make the most of the hours when I feel good,
because I know they won't last. I do as much as I can before
the sick feeling comes back. If I do too much, I know I will
pay for it later.
Sometimes lupus will go into remission for weeks or even months,
and I can do more of the things I want to, but once it becomes
more active, it is difficult to get under control. There is no
cure for lupus. Drugs which suppress the immune system are used
to try to decrease the symptoms and limit the damage to major
organs, but they are not always successful. Kidney disease is
a common complication and many kidney transplant cases are a
result of lupus.
I have to work very hard to stay as healthy and fit as possible,
but it's a challenge and often discouraging. Having a chronic
disease makes me lead a much healthier lifestyle because I don't
take my health for granted. It bothers me to see so many people
take chances with their health through poor lifestyle choices
such as smoking, drug or alcohol abuse, poor diet or lack of
physical fitness. My illness has made me acutely aware of the
value of health and I constantly strive to improve mine through
phys ical fitness and a healthy lifestyle.
Stress is a major trigger for a lupus flare-up so I need to minimize
it whenever possible. In the past I never discussed my illness
with my friends because I was afraid they would treat me differently.
It is such a hard disease to explain, it seemed easier to avoid
telling anyone about it. This has led to many problems for me,
because people did not understand why I was sick so much or why
I could do so much one day and so little the next. I have been
called lazy and accused of not making an effort.
I was once told by a staff member at my former school that it
would be easier for them if I had cancer or a broken leg because
it would make me look sick. Cruel remarks such as this stem from
ignorance, as most prejudices do. By making people more aware
of lupus I hope to prevent this sort of reaction for other lupus
patients and make it easier for people involved with them to
understand the challenges they face.
Lupus is not well understood. This disease of the immune system,
often referred to as "the disease of a thousand faces"
produces a wide range of symptoms that may come and go, and vary
widely among patients. Over 50,000 Canadian are known to have
this desease, most of them women of childbearing age, but it
can affect anyone.There is no cure for lupus and the cause or
causes are not known.
I am asked "what is lupus" repeatedly, and I explain
to people that lupus occurs when the body is challenged by various
viruses and organisms and responds at first as a normal immune
system would by producing antibodies to destroy invaders and
protect the body. In people which Lupus, however, the immune
system sometimes does not shut off its production of fighter
antibodies, and this can result in potentially life-threatening
damage and inflammation to major systems and organs. The name
lupus is derived from the Latin name for the wolf, lupus canis.
Lupus patients often have a facial rash that causes reddening
of the cheeks and across the bridge of the nose, in a shape similar
to the mask markings of the wolf. My rosy cheeks are often ironically
mistaken for a sign of good health and people will tell me how
well I look when I'm feeling terrible.
I use the wolf comparison to describe lupus for several reasons.
The wolf is one of the world's most misunderstood creatures and
has suffered greatly as a result . Because of a lack of awareness
of the disease, lupus patients are also often misunderstood and
are accused of being lazy or hypochondriacs. They are often misdiagnosed
or remain undiagnosed due to the variation in symptoms between
patients, and the disease's characteristic of alternating periods
of active flare-ups and remissions.
Wolves have become marginalized by man's disregard for their
habitat and needs. Similarly, many Lupus patients feel isolated
and overwhelmed by their disease and become marginalized as a
result.
Lupus canis, the wolf --is a symbol of strength, courage and
endurance -- qualities that patients need to face the challenges
of living with lupus. |
