Today, I am not writing here as the girl trying to raise awareness for chronic pain and chronic illnesses. Today, I am writing as a chronic pain sufferer. Three years back, I was diagnosed with Complex Regional Pain Syndrome which has now converted into a condition called Central Pain Syndrome. Both are very uncommon conditions. They are so rare that 90% of you must not have heard of them and when you will be curious enough to google, you will be horrified. It’s an everyday trauma living in pain 24×7 and people around you not understanding the situation and criticality of the condition. But, the worst scenario is when Doctors act inconsiderate and clueless about it at the time of emergency.
For the past 9 days, I have been undergoing ketamine infusions, which is a line of treatment for my condition and advocated around the world. The treatment was going perfectly fine, when suddenly last night I had a pain flare up and I took medicine for it. Everything was going fine when suddenly in the middle of the night I got a weird panic attack and I started crying for no reason and then came the worst scenario. I lost control of my whole body and went in a state of shock for a few minutes. As i came out of it, i realised i couldn’t move any part of my body. I couldn’t respond to anything. My parents were their with me when this happened. They were clueless and all in a state of panic. Somehow, my father picked up his 26-year-old daughter off the bed to take her to the hospital. My father is 59 years old man, suffering from arthritis, he still gathered strength to pick her daughter.
The hospital we went to was Safdarjung Hospital. It is considered one of the best hospitals in Delhi NCR. My parents had my prescriptions in hand about my infusions and by then I was able to speak applying a little too much force. I was active enough to explain my situation speaking slowly that, “Body not moving, trying to move. Took clonotril. Still not moving”. The doctor saw my reports and started criticising my treatment protocol and went in a corner to discuss the case. They went in a corner because they had no clue about my condition and what kind of treatment they should be giving me. They were convincing my parents to admit me in the hospital, but they won’t be providing me with any kind of treatment since they don’t know what treatment should be given. They wanted me to stay in that scenario on a bed until morning when their pain specialist could come and assess me. By then, I was choking myself. All my soft tissue muscles were cramping badly and I was in more pain with my whole body still stiff.
My parents by then were trying to reach my current doctors, who were asleep since it was late in the night. After multiple calls, the doctor finally picked up the call and asked to give me a buscopan injection immediately to release the muscle stiffness and spasms. But, the doctors in Safdarjung wrote it on a piece of paper and asked my parents to drag the stretcher to one corner of the room where I ll be given that injection. I was still choking myself badly. They dragged the stretcher to the corner to the compounder to realise that they don’t have the muscle relaxant (Buscopan) and that they have to get it from outside somewhere, they can’t help us. My parents kept on asking where is the nearest pharmacy. But, they had no response to it. A fellow patient tried to help, giving the direction of the pharmacy which my mother ran to in the middle of the night. The doctors were busy giggling in one corner least interested with what was happening. I could see a bunch of doctors just sitting on the table chit chatting and when my parents asked for help they just shook them saying just go and buy the medicine, we can’t help you. I was still choking myself badly. And I could see my father in tears all helpless standing their. My mother finally got the injection and they gave it to me.
I have been fighting this condition since last 3 years and I have never given up in the worst scenario. But, seeing my father cry, it broke me .
I am a Dentist myself. As a kid I aspired to be in the medical, dental profession so that one day I could help people in pain .
Today, I am ashamed of calling myself a Dentist. Ashamed of calling myself a Doctor. If this is how patients are treated in emergency in prestigious hospitals like Safdarjung. I am ashamed to be a part of this field and the Indian Medical Society.
I am not the only one who has suffered such a scenario, there are many chronic pain and chronic illness sufferers who have had similar situations in the emergency. They have been left suffering in pain for hours, because the doctors couldn’t understand their illness and asked to go home later without any medical assistance provided.
Reason: Lack of knowledge about chronic pain conditions and chronic illnesses. Never considered as an important part of the medical curriculum, hence never cared about them.
If today, I am writing this down is because I am sick of this situation. And its high time and the healthcare facilities need to be changed. Else, the health minister should just declare in the whole country that we cannot provide any help to chronic pain and chronic illness sufferers. We should be provided with medical visa and full medical insurance and asked to move to other countries. Where, we will be considered as Humans who deserve the right to live a life. Since, Indian Medical services will never change and we will be suffering because of it everyday and it will never change.
Isn’t it enough of a torture already going through pain 24×7 that when the time comes and we need medical assistance, we are left lying on a stretcher to suffer.
If you feel, I am wrong with my opinion and we the chronic pain and chronic illness sufferers don’t have the right to be provided with immediate medical assistance. That we are not the humans in need. Comment in here . But, if for a minute you feel the same. Kindly share the word, else our country will drown. Drown with the reckless insensitive doctors sitting in those emergency rooms who don’t care about the patients suffering.
– Anubha Mahajan
(ashamed to call myself Dr. ANUBHA MAHAJAN for the first time in life)
I’m so sorry you had to go through this. Unfortunately, if you have a relatively rare and unknown condition, things aren’t much better in so called “developed countries”. I’ve had doctors google my illness in front of me, dismissive doctors (cause you know I’m young and don’t look ill)… the list goes on. Sending you best wishes.
What a terrifying and traumatic experience you had – I am extremely saddened at what you had to go through. This event you faced will remain etched in the memories of your parents and you forever and I only hope that with time you overcome the trauma. It keeps eating you from inside each time you recall it.
I am not surprised though because I faced a similar scenario at RML hospital in New Delhi with a critically ill family member who was in the emergency room (whose death was expedited by the RML staff). The 3 days I spent there will haunt me for the rest of my life. The night a few pediatric patients died one after the other, devastated parents bawling holding their children, and the doctors joking, rolling about in laughter and playing with their mobiles at the central station right in the middle of it all – didn’t flinch, didn’t stop their laughter for one second. Didn’t show a shred of common courtesy of staying silent while the parents wheeled their dead babies out of the room, through the main door 5 feet away from the doctors’ table.
I think the hundreds/thousands of rare diseases are indeed beyond the scope of the functioning memory of a postgrad level doctor, be it in any specialty. But I think there should be a better referral system, a more reliable and accountable phone and on-call consultation network system and a general approach of compassion and excellence – all of which are lacking in the setting you faced. Even when we study more and more with each decade of growing knowledge, there will always be a lot that we do not know. But that does not justify us becoming the uncaring, callous, indifferent monsters who work in these hospitals for any patient who turns up with something we do not know.