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Lupus makes my life more meaningful
We often find people with lupus lose hope when a medical treatment they have undergone doesn’t bring the recovery they expected
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e often find people with lupus lose hope when a medical treatment they have undergone doesn’t bring the recovery they expected. Indeed, it is not easy for people who suffer from Systemic Lupus Erythematosus (SLE) to deal with pain, physical discomfort, complications and other problems over a long period of time.
There are even assumptions that people with lupus will have to suffer from the illness for their whole life, because, up to now, there is no medical cure. Is this true?
To deal with chronic illness, especially one in which the causes and medications are not yet known, the best way is not to make ourselves suffer.
Thus, lupus should not be considered as an obstacle for us to have and to enjoy a good quality of life. Therefore, suffering from lupus is not the end of everything. Instead, we can still have a meaningful life despite it.
The effort to make the life of people with lupus of better quality and more meaningful will very much depend on how we see the problems we encounter.
This article tries to look into the problems frequently faced by people with lupus and tries to compare, as well as to appeal to people with lupus to look at the problem from a different perspective.
This different point of view will help build a positive mindset and motivate people with lupus to live a meaningful life.
“If you want small changes in your life, work on your attitude. But if you want big and primary changes, work on your paradigm”, says Stephen Covey, the writer of motivational books.
Given the fact that lupus is a big challenge, people with lupus should not just use common perspectives or paradigms.
Illness can be seen as a test aside from a misfortune. A test has a positive value as a person who passes the test will have a better quality life. Illness can be seen as another form of God’s love.
Those who become ill can be seen as the people chosen to take the test. From a religious view, illness is seen as God’s way of erasing sin. There are cases in which people can learn lessons and get to know the meaning of life, get closer to God and can feel life at its most essential after contracting an illness.
With this point of view, illness is not a bad thing. It is like a process to sharpen a knife a human barely needs in life.
In efforts to deal with lupus, medical treatment alone is never enough. It requires mental or spiritual empowering from the people with lupus. Spiritual empowerment will build hope.
Looking to God is a great power that people with lupus can obtain. Without spiritual understanding and the ability to get into spiritual matters, the motivation and vigor of people with lupus is difficult to maintain and improve.
Many non-technical factors are difficult to explain because of human’s limited logic. It can only be understood through a spiritual approach.
New problems that are seen as further burdens will only unsettle one’s state of mind. If this continues, people with lupus may utter this sentence: “Patience has a limit” or “I can’t stand this further burden” which eventually leads to hopelessness.
This problem is an example of how a spiritual approach is needed. No matter how heavy the misfortune or test is, we must be patient, because God has said that the burden or test on us will never exceed our capability. Without such belief, people with lupus will be quick to give up.
Hope is the key to staying strong and optimistic. But if an illness does not provide any hope of a recovery, does it mean the strength to try for a recovery also diminishes?
From the spiritual side, recovery does not always mean freedom from illness. Humans often think that they have the right to determine the outcome of their endeavors.
And if the outcome from any endeavor is not as expected, it is considered bad and they will be disappointed.
In fact, God knows more about what is best for humans.
If a human is destined to have lupus, it does not mean that bad things will last forever. If lupus can’t be fought or defeated, why not try to befriend it?
Perhaps, that is the best thing for people with lupus. Probably, living with lupus will make their life more meaningful.
Healthy people do not have a monopoly on a good quality of life and a meaningful life. Healthiness is not everything.
Many people are healthy, but they do not have a good life. Various facilities and opportunities we have do not always make our life meaningful to us or to others.
Living a meaningful life is possible for people with lupus. There is one motivational sentence that the writer always remembers: “The body can be ill, but the soul remains healthy” and also “Being ill is not always suffering”.
It opens one’s mind on how to deal with lupus. Adjust to life with lupus and understand our capability. There are always positive things in our body. Check and identify the strengths and weaknesses that may come with lupus.
Then, make use of all that potential to create, without worsening our health because of lupus.
In an effort to live a meaningful life, people with lupus are recommended to join a support group.
People with lupus should throw off their hesitancy at joining a support group. A support group is a forum to fight together.
A joint struggle will make things easier as people can share their feelings, experiences and knowledge. People and volunteers can motivate each other.
In Indonesia, two support groups have already been established: Bandung-based Care for Lupus Syamsi Dhuha Foundation and Jakarta-based Yayasan Lupus Indonesia (Indonesian Lupus Foundation). People with lupus should make use of them.
The transformation of the way of thinking as described above is one of the endeavors to make a
big and elementary change in the way of thinking among people with lupus in dealing with existing problems.
It is hoped that with a change of perspective and way of thinking, people with lupus can see many opportunities and good things to make their life much more meaningful.
In efforts to deal with lupus, medical treatment alone is never enough. It requires mental or spiritual empowering from the people with lupus.
The writer has been living with lupus since 1999 and chairs the Syamsi Dhuha Foundation, an NGO which operates Care for Lupus and Care for Low Vision Support Group. The article is dedicated
to all people with lupus in relation to World Lupus Day, which falls on May 10.
