Living with Lupus | The Daily Star
12:00 AM, October 22, 2019 / LAST MODIFIED: 12:00 AM, October 22, 2019


Living with Lupus

Another day, another torment. The same will follow the next day — the excruciating pain, inexplicable fatigue, and never-ending drowsiness.

This is life with lupus, a rare, chronic autoimmune condition where the body’s immune system starts working against itself. The situation is such that the body gets into an internal battle, every day, for the rest of its days.

The word originates from Latin, which literally translates to ‘wolf’. The malar rash caused by lupus is one of its main symptoms. They look like circular discs and typically appear on the face on either side of the nose.

In the past when research was limited, people used to assume the inflicted person has been bitten by a wolf, thus derivation of the name.

Lupus mostly affects women between the ages of 15-45, and approximately five million people worldwide are suffering from it. When diagnosed at a young age, it does not dawn upon the victim the massive effect this will ultimately have. It will seem like any other ordinary disease that will cure with the help of medicines. The question stands, how will your immune system help you recover when it is no more functioning normally? The answer is, it does not.

In our society, most people are not aware of the existence of such diseases. Autoimmune diseases are not given much importance and consideration, mostly because they are uncommon. Only someone who has been diagnosed knows about the pain and the trauma one has to face every passing day.

It shackles the afflicted. 

The treatment of lupus works on a trial and error basis, as no particular medicine works for all. What may work miraculously for someone can cause severe adverse reactions for another. Furthermore, treatment options are limited, even in the most technologically advanced and medically facilitated countries.

Dropping the spotlight on the effects of this disease— they are endless. It can affect any organ of the body at any given time. Thus, sufferers have to be extremely wary. To add to this misery, the medicines come with more side effects than benefits.

A victim of lupus has to bring changes in diet, habits, daily routine, and even life choices to say the least. With each passing day, the medicines and the disease will wear out the body making the ailed feel tremendously fatigued. 

Currently, it is impossible to cure the disease completely as research is still in progress. What will help a victim recover other than medicines is support from the family and society. It is common for a sufferer to lose hope and go into depression. However, encouragement from family, friends, and society will aid to make this thorny journey easier.

As victims are helpless regarding their physical health, mental health can somewhat be controlled. An important factor that is mostly overlooked is good psychological wellbeing.

Mental health is as important as physical health when it comes to autoimmune diseases. When a person fighting lupus falls into the trap of depression, the condition exacerbates. The mental pressure drags down the physical abilities, and eventually, the will to live.

We are living in a society where people are too quick to judge. The reason for obesity can be adverse reactions of medicines and not overeating. The reason behind falling grades can be tormenting aches and pain all day, and the sudden change in behaviour might be due to loss of patience every day. A person may look normal outwardly but could be battling a monster internally. 

Lupus forces you to reconsider your life plans. It compels you to think about the future, how long can you survive? Even the strongest people fall prey to this deadly aspect.

Suffering from joint aches and fatigue at the age of twenty is not normal when you want to catch your dreams. Seeing your peers get ahead of you is not fair when you are trapped by this limitation that is beyond your control. Making life decisions revolving around this condition is not fair when you want to fly and prosper. 

Certain habits and lifestyle changes, together with the support from family and friends, can make this tough journey easier. We can help these victims, these silent sufferers.

Most people will not willingly speak about it to avoid the lengthy explanation and the harsh trauma of their lives. By just being friendly and congenial with them, we can be active supporters and help these people lead a better life.

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