Catch-22 situation for chronic autoimmune disease patients
Weird times are going on. The world was busy in different perceptions, experiences, innovations, expansions. Students made their own academic and career plans. Who could have preempted that all planning and perceptions of living a normal life will be changed in 2020. This would be a remarkable year in medical science. A unique, deadly virus- COVID-19 had taken hold of everybody's lives.
Being a patient with vasculitis, I had a unique experience also. Having an autoimmune disorder, I had to take strict measures to avoid COVID. Living in a city like Mumbai, we were swamped with COVID patients around. During lockdown I realized the COVID patients were not the only sufferers. The people who have been suffering from terminal diseases or autoimmune diseases like me were equally victims of the pandemic. Maybe not in a direct way but indirectly. Many patients were stuck and waited long hours to reach hospitals and doctors just to get their maintenance medications. A number of patients lost their lives just because they couldn't get their regular medications, consultations and investigations done on time.
In June, 2020, I started having swelling of my leg. It took me a complete month to get all my investigations done because of government restrictions and lockdown. Many allied medical services weren't available - private labs were closed, government hospitals were catering only to COVID-19 patients and private hospitals were forced to get every patient tested for COVID before any service.
Meanwhile, my swelling spread to my entire body and I gained 20 kgs in a fortnight. My family wanted me to come to my hometown and my doctor in Mumbai suggested admission for intravenous injections. We consulted multiple doctors and got varied opinions. We had to take a call immediately as we were in the midst of a curfew. My doctor suggested during an online consultation to get a private nurse to medicate me at home. During the first phase of lockdown, no one was willing to enter a house to provide personalized health services. Despite multiple attempts, we failed at getting a nurse. At that time- health was important, my child's well-being was important, social distancing was important amongst other things. After a very stressful night, we decided to fly to my hometown early next day and my treatment started in a leading private hospital as no government hospitals were handling cases like mine- depriving all the poverty stricken and needy people of the crucial medical services.
I am blessed to have a really caring and proactive family who took care of me. I also had staunch and devoted doctors to depend upon. Most of the people aren't this lucky. I hope this phase passes soon as the entire human race is in a state of confusion and dilemma.
- Written by an anonymous patient.