In conversation with Mr. Sanjeev Agrawal

September is celebrated as Pain Awareness Month across the globe.  To commensurate the same, we have been sharing stories from pain warriors, doctors and caregivers of their experiences of living with pain.

Today, we have with us a truly inspiring gentleman, Mr. Sanjeev Agrawal. He is a pain warrior himself and along with it, he is also a caregiver for his daughter- Swati Agrawal  who is a Fibromyalgia Warrior herself.(whose story was featured in this series last week. You can read it HERE) Join us as we talk to him and know what living with pain means for a caregiver and a pain warrior.

In conversation

  • Tell us something about your life as both a caregiver and a survivor of Kearns-Sayre syndrome. Share your experiences on these roles overlapping and facilitating or hindering each other.

KSS has the following major impacts:

1. My eyes do not open without support and vision is completely blurred in one eye.
2. Hearing loss.
3. Tinnitus (a constant ringing sound in my head)
4. Phantosmia (smelling smoke all the time)
5. Sleep Apnea (sleep disorder)
6. Peripheral neuropathy (severe shooting pains in the back, the neck, the arms, the legs and the fingers)
7. Diabetes.

All these result in great reduction of quality of life. Simple pleasures like reading, photography, travelling, food, etc. become very difficult. This has resulted in depression, in frustration, in anger and finally in a couple of realizations:

I can’t help being in this condition. It is not my fault. It is impossible to explain all the problems to anyone. I have to enjoy the good times to the fullest and survive the bad ones.

This has also helped me understand, my daughter, Swati’s situation somewhat. I understand that she is going through tough times, and my support, empathy and care helps her to get through these times. I can understand her frustration, that she is in pain without really knowing its intensity and battling depression without knowing how to elevate it.

Caregiving (and accepting care) and surviving is neither easy nor difficult – it is what we have to do, so we do it.

We enjoy movies, T.V. serials, books, board games, food and drinks apart from playing with her cats whenever we can. We visit doctors together if we can, quite often topping the visit with a good lunch or coffee.

So – no regrets – just some hope that we may have some painless days.

I can’t help being in this condition. It is not my fault. It is impossible to explain all the problems to anyone. I have to enjoy the good times to the fullest and survive the bad ones.

  • How did you initially face such a rare condition? How did people around you react?

With disbelief and incomprehension. For more than 25 years I had been under treatment for Myasthenia Gravis and then suddenly being told that I did not have MG but KSS was shocking. People don’t know how to react – you do not know how to react. So I learnt to accept it and move on with my life.

  • Was the process of arriving at your diagnosis easy? Tell us more about it.

Definitely not easy. Chance played a major rule. From my childhood, I had drooping eyelids, and got operated at AIIMS in my teens. Drooping became more prominent over the next ten years and another ophthalmologist suggested another corrective operation. Went for a second opinion to a doctor from a smaller place – he told us that I had MG and eye operations won’t help.

Went to various neurologists, got diagnosed with MG, got an operation done to remove a tumour and was put on medication. Medication continued for next 25+ years, without any noticeable difference in fatigue and worsening of the eye drooping. My eye muscles had become very weak, I couldn’t move my eyes and vision was getting blurred.

person holding pen writing on daily report schedule paper
Photo by rawpixel.com on Pexels.com

Meanwhile, my daughter was having a tough time in Mumbai with debilitating body pain. An unconfirmed diagnosis of Fibromyalgia, and with no line of treatment or management suggested, worsening body pain resulted her in giving up her career in Mumbai and moving in with us in Greater Noida. The next three years were tough. Her body pain was destroying her. Doctors in NCR were dismissive of Fibromyalgia, my fatigue and vision blurring was increasing, and we were running from one doctor to another for some help.

Swati was recommended a doctor in Medanta, Gurgaon and we went to see him. He immediately told us to consult another neurologist in his department as he was a neuro-surgeon and not a neurologist. Dr Monica Thomas (who left Medanta within a few days after seeing us), the neurologist, saw us – listened to Swati and told us two things – that I needed to consult her more than Swati and secondly, Swati should immediately get help from a therapist (she recommended one – and Swati still sees her regularly. Her BPD was diagnosed there and the line of treatment/management stemmed from those visits). After talking to me, Dr. Thomas was the first one to tell me that I had KSS and not MG. A day here or there – and neither of us may have had a proper diagnosis. Chance.

Caregiving (and accepting care) and surviving is neither easy nor difficult – it is what we have to do, so we do it.

  • Have you found any support groups or communities in the course of your journey? Please share.

My daughter has found some – yours included.

  • What according to you are issues/hurdles for those fighting rare diseases in India?

1. Accessibility to information: It is almost impossible to get information about rare diseases in India –e.g. on symptoms, possible treatments, qualified doctors, etc. Most hospitals and doctors, even in big cities, are unaware of these. All, repeat all, the doctors (except the neurologists) that I have visited in the last 2.5 years did not know what KSS was. I carry a printout of the syndrome with me every time. Patients living in small towns or villages will probably live their entire life unaware of their illness.

2. Diagnosis and treatment: After the first ‘suspicion’ of having a rare disease, most of the tests, if any, are not available easily. Nor is available a list/panel of experts who could suggest the line/s of treatment. Getting a second opinion is almost impossible.

3. Expenses: I had the resources, so I could afford the visits to several doctors, many unfruitful, the tests, and loss of working days. I do not even want to think about the condition of a poor sufferer.

4. Lack of Insurance cover: Most of these illnesses require long term treatment as ‘out-patients’. Most policies do not cover OPD treatment and also refuse to cover illnesses not explicitly mentioned, which rare diseases are most often not.


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  • How has been your experience with healthcare in India both as a caregiver and a survivor?

Poor. Most of the staff and the facilities in the hospitals are, at best, unsympathetic, to those who suffer from invisible illnesses. Fellow patients also do not comprehend how a ‘normal’ person could need special attention – even for simple things like sitting in a chair after marking your place in the queue.

  • What do you think families and society can do better to be supportive to warriors like you?

My hopes lie with the young … that they will become aware of the major issues facing the world – like intolerance, pollution, marginalised sections of the society (including people like us), etc. and consciously, intelligently, take a stand, hopefully the correct one.

So all those who have any thoughts on people like us must share them with their friends, families, colleagues, whenever they can.

I have found support, from family and friends, whenever I talked about our problems.

  • What is your message for other caregivers/survivors?

Enjoy the good days to the full…the bad days bravely… talk about your experiences, helpful doctors, support groups… we are not alone.

P.S: All images used are copyright of Mr. Sanjeev. Agrawal.


If you are a pain warrior or know someone who is one and would like to share their story with us, please do get in touch with us. 

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