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?
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.