An Individual Is Much Bigger Than His/ Her Disease

January 3, 2016

Yesterday, I met one of my regular known patients who had come with sweets to announce a new arrival in his family. Why known? …. Because he has taught me an important lesson. AN INDIVIDUAL IS MUCH BIGGER THAN HIS/ HER DISEASE. Now, what does that mean?

life goals blog

Samir, a young man in his early thirties consulted me almost 3 years back. He was suffering from Ankylosing spondylitis for 6-7 years. Apart from the disease details, I could make out that he had seen his life go tospy turvy in these years. Right from the first day, I realized that there was something different about him. Once the discussion about his Ankylosing spondylitis was over, he would make it a point to talk about his life, his goals & ambitions. In fact, I felt as if he was laying down a roadmap of what he wanted & asking me to help achieve that with the medications.

From his talks, I understood that he had a saree shop. He was unable to manage it due to his backache & his wife had to do the needful. His social & married life too was in bad shape due the persistent pain. Once as he was talking about his life, I asked him to take time out to put down his wishes & priorities on paper & bring it during his next visit.

This is what he had listed-
1) Conquer his pain & the disease
2) Get back to work. Manage the shop on his own
3) If possible, change the business into some other business that was more manageable. A saree business required one to travel to distant areas to buy sarees at a cheaper cost & for variety.
4) Once the financial situation improved, think of starting a family.

As I said, he had given me a roadmap to work on. We started the work together.
DMARDs were not helping him. We discussed about biologics. In India, biologics is never an easy thing as these are expenses out of pocket. He spoke to his wife, the seniors in the family, friends & mustered sufficient funds to start & sustain the treatment. I did my part & managed to provide the most from the company’s ‘Patient assistance Programme’.

As I think about it today, the rest is history. He did well with biologics. He achieved his first goal of conquering his pain & the disease in the subsequent months. He was managing his shop well. His profits improved. With these resources, he could manage the biologics on his own. After a year, he decided to shift over to a DTP business. He undertook a part time course to learn DTP. A DTP business does not require traveling or lifting weights. His plan was clear. Once the business was set, he would employ the staff & get the work done. This was clearly a good decision given his condition. His DTP business stabilized over a period of time.

Yesterday, he was at the clinic not for a consultation but to announce a new arrival. I was moved. He had indeed come a long way. Though this would sound like a fairy tale, but it isn’t. There were many obstacles particularly with the finances for the biologics. But, since he had mentioned his priorities & made me a partner not just in achieving remission but also in his life related goals, our path was clear.

Please understand that you are not the same as your disease. You are not ‘a case of Ankylosing spondylitis’. That is so not right. Your life is much bigger & you should not forget your professional, personal, social, marital life. Talk about your goals, aspirations with your Rheumatologist. Apart from ensuring that your disease goes in remission, we can plan & help you achieve these goals.


Lupus- the Pandora’s box: when all hell breaks loose

January 19, 2014

lupus pandora box

Lupus has long been represented by two mascots: wolf & the butterfly.
The word ‘Lupus’ (Lupus- wolf in Latin) was coined by a thirteenth century Physician Rogerius as the facial lesions in Lupus looked like wolf bites. The butterfly as a mascot has its origin in the butterfly shaped malar rash seen in SLE.

There have always been debates regarding the ideal mascot for lupus. The wolf is a sinister, cunning animal. It aptly represents what Lupus can do to a person & also represents the origin of the name. However, as a mascot, it has a negative impact.

As against this, butterfly is beautiful & represents vitality. Many have even compared the life history of a butterfly emerging from a cocoon to a Lupus patient emerging with flying colors from a flare.

As I was reading the journal Lupus the other day, a beautiful explanation held my attention. The author MJ Fritzler has highlighted the Greek mythological story of the Pandora’s box in an article.

According to the Greek mythology, Zeus, the father of the Gods & men, ordered Hephaestus, the God of craftsmanship to create Pandora, the first woman on earth. She was endowed with many gifts: clothed Athena, endowed with great beauty by Aphrodite, and eloquent speech by Hermes. After Prometheus stole fire from heaven, Pandora was given a beautiful container by Epiphemus. Pandora was given explicit instructions not to open the container under any circumstance. However, another of her God given traits, curiosity eventually got the better of her & she opened it only to find that all evil escaped & invaded the entire earth. Realizing her error, she tried to make amends by closing the container, but the entire contents had escaped, except for one thing- a winged creature with iridescent wings – the personification of Hope named Elpis.

This story would aptly describe what a Lupus patient goes through. Once diagnosed, it seems like the Pandora’s box is opened because ‘all evil’ seems to break loose. It is the butterfly that gives the hope.

Indeed, over the years, the butterfly has brought hope to lives of Lupus patients & the prognosis has improved significantly.

References:

Boltzer JW. Systemic lupus erythematosus. I. Historical aspects. MD State Med J 1983; 37:439

Lahita RG. Introduction. In: Lahita RG, ed. Systemic Lupus Erythematosus. New York: John Wiley and Sons. 1987; 1-3. (Fifth edition published 2010)

http://lupusadventurebetweenthelines.wordpress.com/2012/04/24/lupus-and-its-mascot-butterfly-or-wolf/

Reflections on Lupus 2013: butterflies, wolves and prophecies MJ Fritzler Lupus, October 2013; vol. 22, 11: pp. 1092-1101


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