Taking ownership - a personal story

Taking ownership - a personal story

This is just a little incident that happened in my family. I thought to share it. As you all know about me I have been writing from the perspective of a young person living with CAH in Pakistan. I mean we all cannot stay quiet and just hope for a miracle. We need to work to make a change so I decided to speak out regardless of how it will turn out for me.  Even though my parents told me not to highlight myself time and time again, I believe the more we hide the more we end up in problems. 

In fact today I am going to share with you a story about the family of a child with CAH who suffered great loss because they worried more about hiding their child’s illness than learning about it.

Many families in my country try to hide their child’s illness. My parents did this too. Like all parents, they love me and care for me. They always tried to protect me. To the point that we made a nick name for my medication so that if my parents had to remind me of my medication they used the nick name and asked me if I have met him (the nick name) or not. I would understand their coded way of asking me if I had had my meds or not.

This story is about a family similar to my own, but different. Like my parents, they had a child born with CAH, but in their case, they wanted to hide their child’s illness from everyone and were not even willing to discuss it with anyone – not even with me or my parents even after we shared with them explicitly that the child and I have the same condition. They were never ready to talk to us.

This family’s 7 month old child had been falling sick over and over again since birth. Since that family lived in a country where basic healthcare was not that great they had to make trips to Pakistan for treatment when the child fell severely ill. After multiple trips to Pakistan they finally learned that their child had CAH.

One particular day their child fell acutely ill when they were back in the country where they lived and they had to grab a flight in a rush to get to Pakistan. The child was deteriorating very fast. I learned about the child when the child was on its way to Pakistan with his parents. As soon as I got hold of the child’s parents I informed them to come to the city I was at so that I could be there and talk to their doctor. On their way even though the child was severely vomiting the parents were still administering the medication through mouth. They knew about stress dosing but they were not informed about the need for emergency injections with hydrocortisone when the child is not able to take the medicine orally. The doctor was an endocrinologist trained in the United States (not trying to degrade but trying to tell that even in the world’s best place not much is known about CAH) but was relatively new to the illness in terms of its management.

Eventually the parents made it to Pakistan but when I contacted them they were not interested in talking to me. The reason was that they did not want people to know about their child’s CAH and did not want to own that their child was suffering from an illness that could prove to be fatal if not managed well. They were new parents to this illness and had no idea about it. They told me they were in contact with their doctor who was in the other city, and yet they were not willing to go to that city because their extended and immediate family lived in the very same city as the doctor, and they worried the family may discover their child has CAH if they went to the city. In fact they told me explicitly not to tell anyone about the situation and were more concerned about hiding their child’s CAH than managing it.

Now that the parents were in Pakistan they were not able to assess that their child needed hospitalization and that their child was so severely dehydrated that he needed multiple fluid transfusions. Instead of admitting the child to the hospital they kept the child at home and when I asked them they told me they are fine and are in contact with their doctor. Finally a few days after they got to Pakistan the child’s condition worsened to the point that the child developed seizures and was taken to the hospital. And a little while later the child passed away.

The moment I learnt the child had passed away it not only made me sad that we had to lose a child to an illness that was nothing but a simple hormonal disorder like Diabetes which just needed prompt management, but it also made me angry. Angry at the fact that we as a society are so narrow minded that we are afraid to even discuss our illnesses even in times when someone is crashing.  We are more concerned that if someone knows about it the future will be destroyed not putting faith in destiny.

In this short sad story I also want to tell you something that might give you a ray of hope if not much.

I too was born with Classical salt wasting type CAH in the time when there was no CAH community in Pakistan. In fact there was no pediatric endocrinologist in the country. My parents went out of their way to learn about it. I grew up in a very secure family. I always questioned myself; why do I have CAH and am not like the other kids in my school? Why did I look different? All these questions kept popping up and I had no answer to them.  The only I answer I got from my parents was there is something big waiting for you which we do not know ourselves.

It was only when I got into med school that things started to make sense. From there I started to learn about my condition and that day I decided to learn about it and then be able to help the people suffering from it. Had it not been my illness I would not have known all the doctors that I know nor would I be helping other people who are suffering from it. Sometimes we are soooo occupied thinking negatively that we are not able to see the positive side to things. Sometimes all you need is time. Every cloud has a silver lining, but it’s only a few who are able to see it. Only those who look hard and don’t settle for less are able to see it eventually. The most important first step to finding the silver lining is that you must start owning something before you can work on it. 

In closing, I would also add that amongst the many research articles I have read on CAH, one was an article that showed people with CAH have higher IQ. So I ask all those who are hiding why do you feel the need to hide when most of us are smarter than the average group of people? Don’t ruin your mind and IQ by having a negative outlook. You are beautiful and smart - live it and express who you are. OWN YOUR SELF COMPLETELY.

(A true story)

Written by

Salman Munir