Chronic Illness, chronic pain conditions, chronic pain india, self care

A Journey through Invisibility

Sharing with you a poster, conceptualized by Dr. Anubha Mahajan and co-designed by Dr. Anubha. Mahajan and Sagar Mangla for advocating Chronic Pain at the Shared Decision Making Conference held earlier this month.

She used this poster to share her story in her speech. Aptly titled ‘A Journey through Invisibility‘ this poster has a story of it’s own.

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Juggling through multiple wrong diagnosis, you reach the right one.

I suffer from complex regional pain syndrome. Eventually with time, it turned into central pain syndrome since I was harassed and bullied because I suffer from an invisible illness. My journey with CRPS started in April 2014, due to a doctor’s mistake, which lead to a nerve injury. The first feeling I ever felt was that of thousands of ants biting me, next came the burning sensation which I could feel inside but my body temperature was normal and still that burning sensation was still there.

All my reports, starting from my MRI scans to blood reports, were clear, yet it took them a year to diagnose me. To be truthful, my diagnosis brought along a sense of relief. For a person like me, who was suffering from an invisible illness, a correct diagnosis after multiple wrong diagnosis is a huge relief.

One of the craziest diagnosis I had, was about a tumor in my leg! I was asked by one of the doctors to get MRI neurography, which costed 30000 rupees. On the day of my appointment, they did not have the right person to do the test and yet I was given an appointment. The very next day I got a call from the diagnostic center stating an emergency and asking me to come down to repeat the test at the earliest. On further inquiry I was told I might have a tumor in my leg. Though I did get an appointment for the next day but those 24 hours were the most difficult hours of my life. Imagine a 23year old girl being told that she has a tumor and hence, some sort of a CANCER.

Until now I had always gone to the diagnostic center as a patient but this time, I used my full name that is, Dr Anubha Mahajan & asked for the scans before going in for another MRI neurography. The fact that it would have costed me another 30000 was another aspect altogether. Money was not the real privilege in the story it’s the word doctor that scared them enough to tell me the truth. Rest is history and as you can see, there was no tumor.

For a normal person, it would have been worse than what I faced because they would have believed it and paid for another scan to realize it is not a tumor. This situation could have been avoided if the doctors in the diagnostic center would have been careful and honest about the situation. That is how it should have been!

There’s another incident which is very essential and crucial to highlight shared decision making which was clearly missing here. One evening, we were having dinner with my family at a hotel and later decided to order desserts. While we were ordering desserts, I suddenly felt a little weird. I felt something wrong is about to happen and I was trying to express it to my mother who was sitting right next to me. But, by the time I could express, my whole body had gone in a state of spasm. My entire body was stiffened because of which I was completely unable to move.

My father picked me up and somehow made me reach a nearby renowned government hospital in Delhi. I was moved from a wheelchair to stretcher which was cold enough to make my body even stiffer, while it kept crying in pain. My parents informed the doctors in the emergency room about my illness/condition, showed my reports and the doctors responded by saying that they would shift me to a private ward. In the morning the pain specialists would come and look into the matter until then, I was expected to stay in that stiffened situation with my whole body crying in pain till morning. My parents were still contemplating the situation and trying to reach my doctor somehow.

Finally, they succeeded in contacting my doctor’s team and I was then given an emergency medicine along with a muscle relaxant. The doctors told us that they did not have a muscle relaxant. To make matters worse, the hospital staff was inhospitable and inconsiderate to a point that they did not even bother to help my parents to get it. My mother had to run all around the hospital just to get that one muscle relaxant and my father was helpless in that moment. After getting the muscle relaxant, I was finally able to utter a few words and in another 10 mins all my body parts could move.

In this situation, things could have been different, if the doctors over there would have at least touched my body and felt the muscle stiffness. They would’ve realized I needed a muscle relaxant but sadly I was ignored. The complaints were not really heard and my condition just worsened. When one muscle relaxant might have just made it a little better for me.

I got a diagnosis for myself in one year, having my own share of missed diagnosis and being judged because MRI reports didn’t show anything. I have literally explored all around India looking for the right treatment. I had to understand what actually was happening back in 2017 when suddenly my body started getting affected physically. Reason : Harassment & Bullying.

If you are fortunate you get the correct diagnosis but then many doctors didn’t know how to treat my ailment. They just kept apologizing for the staff but nobody was actually ready to take my case. Until I met this this particular doctor in Delhi. He made it easier for me. I went to see him see as a girl who had no diagnosis for years and was scared. But she also believed he will be able to help her. He heard me out patiently and then explained to me what was really happening in the body. He reassured me I am working on your case so you be rest assured. You need to work on your side of the struggle which is to keep yourself healthy.

Sounds like a happy ending. Right!

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