Global ARCH / Uncategorized  / Stigma: choosing words wisely can make life easier

Stigma: choosing words wisely can make life easier

Comparable to the condition when wind blows and we get random thoughts, alike human emotions are effected by outer elements.  The stigmas of society some way disturb us; moving us away from our own planned paths. Though life is full of uncertainties, we still believe we are best in making decisions. Ignoring the fact that our decisions are effected by myths and stereotypes present in our societies.

I realized this when my congenital heart disease child entered this world. Unwanted sympathies and bundle of questions surrounded our family. Expect few majority of the society was trying to impose the fact that this might be mother fault, her diet, her karma and her lifestyle. Yes I was the culprit in the eyes of majority.  Very few believe it’s God’s planning.

I am rather blessed with ability of deafness, when it comes to my personal life and focusing on my own path. This made me alien in this society as I gave to birth to an alien creature too, my congenital heart disease child.

It was a beautiful day when he came in this world. After having a child with full pregnancy as a bed ridden patient, I thought birth of my Lil one will change things but I never imagined new page of this world is about to open for me and my family.

And then series of awws and ho haye (gesture similar to oh bad) started, undesirable sympathies, unwanted suggestions lured from all sides. The most traumatic was the tweet from Indian fellows in which they mentioned that one day my son will become terrorist and will bombard them… seriously a child who knows nothing received so unpleasantness.

 The day my congenital heart disease son was diagnosed, I kept on thinking about other congenital heart disease families. Having a child with congenital defect is mostly considered as a reward of bad deeds in this world, the families going through stressful scenarios are further not accepted by society.

I still remember the first undesirable advice I received on my child diagnosis was by duty doctor of nursery, who said “You guys are young, you can have more complete and perfect kids, just leave this kid the way he is, untreated, as he has no future, don’t waste money and energy on him”.  

Despite getting too much love and care, somehow the stigmas existing in our societies affected us, besides we tried our very best to ignore. On the other hand most of the families cannot.

While there is presence of positivity, there is negativity too. I was once asked by a lady in market, have you been roaming out in solar eclipse during pregnancy, evil forces are out at that time, which affected your child. Her intention might be good but this made mother like me to think, is this myth is reality.

We unintentionally start thinking what others ask or react for. Despite the fact how strong you are, or how less you care about the world. I was poked at every step.

While asking for donations one NGO owner told me she don’t believe we need money as we were not wearing torn cloths.  Our judgments are sometime so hazardous.

My story with my son is long; families who are already fighting for the lives of their children have to face emotional, financial and psychological stress.  Making things easy for such families is quite easy, by removing those disgraces from the society.  I always say that choosing our words wisely can make others and our lives easier.

My family and I ignored those undesirable disgraces and made our way out, knowing the fact this is life long journey, have to face these stigmas somehow somewhere again in our lives time to time. Trust me sometime empathies are way better than sympathies.  

This blog is just a one page of my book, I am thankful to all those who stood by our sides when my son was going through a lot.

Amy Verstappen

Nahimeh Jaffar 

Nahimeh Jaffar has worked as a certified Project Manager (PMP) in various fields, including Public Health, Biotech, and Pharmaceuticals, working within clinical settings such as hospitals and clinics. In addition, she worked with global communities in Africa, the Caribbean, and the Middle East, supporting various social impact projects. Ms. Jaffar has been involved in preventive health initiatives in collaboration with the Center for Disease Control (CDC, USA) and the Center for Medicare and Medicaid Services (CMS, USA).


Ms. Jaffar holds an MBA in Business Development from the Swiss Institute of Higher Management, Vevey, Switzerland, and a bachelor’s degree in Consumer Affairs from California State University, Northridge, USA.

Amy Verstappen, President

Amy Verstappen has been a patient advocate and health educator since 1996, when her own challenges living with a complex heart defect led her to the Adult Congenital Heart Association, where she served as president from 2001 to 2013. She has served as an advisor to the Centers for Disease Control the National Heart, Lung and Blood Institute; and the International Society for Adult Congenital Cardiac Disease, and worked with congenital heart patient and professional groups throughout the USA and the world.  Ms. Verstappen received a Masters in Education in 1990 and a Masters in Global Health in 2019.