My fellowship at CCYAN is coming to an end. Coincidentally, I have felt short of ideas these few weeks. I’m writing this one late, partly because it has taken me a long time to fully recover from COVID, and partially because I was torn inside my head about what I wanted to say. Lately, my brain has felt like a cauldron with a stew of thoughts in it. I had been hiding safely in my home from COVID, but now that it got me, it’s time for me to go back to my pre-covid life.
At the time of writing, I’m about to fly back to my campus. I had deferred my exams for the previous semester hoping that the pandemic would settle down by Sept/Oct. That did not happen. I have lost a whole academic year. I now need to work twice as hard to get my degree. The pandemic has also doubled my healthcare expenses, and hence I need to work more than usual, which decreases the time I can devote to my academic work. I have also not been to the doctor in more than a year. After a long time, I have once again felt the fear of things going wrong and beyond my control.
One of the things that I’ve come to realise and feel in recent days is how isolating IBD can be. IBD symptoms can vary from person to person, but when you look at those symptoms in conjunction with life experiences, every one of us is on a very different path and fighting a very different battle. It is true for every chronic condition. One community, one group, can never be the answer. We need multiple communities composed of people with diverse experiences to thrive and work with each other. An ecosystem. Without that, there’ll always be someone feeling alone in their experience.
I have always been someone for whom repressing is more comfortable than expressing. Does that not make me inadequate for the job of a patient advocate? Repressing pain and trauma has enabled me to survive. The goal of life shouldn’t be to survive, though. I have compromised on every other aspect of my life so that every day I can do enough to stay on track with my goals and ambitions. Some compromises must be made, but some are forced upon by circumstance and external agents.
In the ancient world, people believed that the sick were cursed by gods. Treatment consisted of praying and giving a sacrifice to the gods. The ill thought that they were cursed. They were killed when the gods didn’t pay any heed to prayers. You might think times have changed, but they haven’t. Too many of us have been told that our illness is punishment for our past sins. Many of us believe it also, so much so that a patient recently said to me that their experiences didn’t matter because they were not good experiences. India is a country where the concept of “invisible disability” is yet to be introduced. In such an atmosphere, people with chronic conditions and invisible disabilities are forced to compromise. After all, it’s practical and easier for everyone. Any ill person that “complains”, does not radiate positivity and inspiration is useless. The attitude in general, towards sick people in my country, reminds me of the phrase - “Ignorance is bliss.”
So if you’re chronically ill - not only do you have to make compromises in various aspects of your life, not because they should be made, but because it’s comfortable for everyone else, you also do not have access to communities where you can share your frustrations, your experiences with people facing similar, if not the same set of circumstances.
Some say that we should not highlight our disability. Some argue that many people are successful with Crohn’s Disease or Ulcerative Colitis, but they do not talk about it. Talking about it is just asking for pity. The people who are going to succeed will succeed despite it. Such thinking patterns stigmatise our illness and strengthen the notion that patients are the problem, not the illness. Patients are not doing enough; others are.
As with everything else, things will not change unless we accept that there is a problem and that there is a real need. The irony in India is that those with voices do not have the need, and those with needs do not have a voice. There is an urgent need to build communities that provide support and advocate for better solutions.
I often feel that I say the same things every month, but I also feel that these things haven’t been said enough times. So to my fellow patients and the people who understand our needs - keep speaking up and keep talking, until our voices are too loud to ignore.
Thank you. Stay safe.