In conversation with Ms. Swati Agrawal

To commensurate Pain Awareness month, we are sharing voices of Pain Warriors from different walks of life, who continue to inspire us by their sheer grit and determination to not let their pain and illness define them.

Today, we have with us, yet another pain warrior who believes in being the change, she wants to see in the world. Swati Agrawal is Director (Operations) at IDIA Charitable Trust, and a lawyer by training. She has various invisible illnesses, and likes to work towards spreading awareness about invisible illnesses and disabilities.

Join us, as she shares her journey of living with pain and spreading awareness about it.

• How long has been your personal tryst with chronic illness?

I was first diagnosed with Fibromyalgia in 2012 or 2013. I was in pain and had other symptoms for about a year before that. So, I would put it roughly as nine years.

• You were diagnosed at a young age, at the onset of your career, how did it affect you personally and professionally?

Personally, I became very isolated. I was living with a friend in Mumbai while my parents were in Delhi. I would get tired very easily so my social interaction started getting very limited. I did not have the energy to go outside and hang out with my friends because of which I would end up spending the entire weekend in bed. Since I was going through something that none of us understood, I lost touch with people.

Professionally, I was in a very stressful job with a lot of work pressure, I just could not keep up with. I had very understanding people in the firm where I was working but it was not possible for me to continue that job and I had to quit. I did not have a job for two years before I could settle down in my current job. Now, my symptoms are less severe and my job is very flexible because of which I am able to manage.

I don’t look like I have an illness. This makes it difficult for people (including many doctors) to believe that I have a chronic illness. If your disability is visible, it is easily believable. Less so, when it is invisible.

• Do you think invisibility of chronic illness makes them complex? How or how not?

I don’t look like I have an illness. Moreover, there are no clinical tests that can detect my illnesses. It is only when I describe my symptoms that indicates that I have an illness apart from slight, subtle and noticeable changes (such as a limp). This makes it difficult for people (including many doctors) to believe that I have a chronic illness. If your disability is visible, it is easily believable. Less so, when it is invisible.

• When and how did you start voluntary work in the field of chronic pain?

After I was diagnosed, I was lost, scared and confused. I did not know what to do and no one around could guide me. People would often not even believe me. I found a support group online called Fibromyalgia Awareness which helped me come to terms with my own illness. This made me realise that we need more voices out there. I don’t want anyone else to feel alone after their diagnosis like I did. That is when I started sharing about my journey online. Slowly, a few spaces published my interviews/posts. This helped people to reach out to me.

And that’s how Anubha reached out to me for Chronic Pain India. Honestly, I was a bit sceptical at first but seeing all the good work CPI is doing and Anubha’s zeal, I came on board. Even now people read my old articles and reach out to me. I tell them about my own treatments, coping mechanisms etc. I also try to find them references to doctors. It is hard to put a timeline to it though. I think I have been doing it for 6-7 years.

• Who has been your constant support throughout?

My father has been a constant support system for me. He tries his best to support me emotionally as well even when he is battling severe neurological conditions himself. Rest of my family – my mother and my brother- have also been very supportive. Other than my family, some of my friends, especially my best friend, have been a constant source of strength. My workplace is also very supportive, and my ex-managing trustee (who is unfortunately no more) was always an inspiration and very kind.

The understanding and love of others is important for any spoonie’s journey towards learning to manage their condition.

• How important do you think is the role of families, friends and community in the lives of those battling a chronic condition?

I don’t think I would have been able to get up from my bed if I wasn’t lucky enough to find so much support in my life – from my family, friends and office. The understanding and love of others is important for any spoonie’s journey towards learning to manage their condition. It is also important that we are not isolated – socially and professionally. In the first two years of my illness, I was very isolated. I had nothing to do all day after I lost my job. This took a huge toll on me. With support of others, I could get back up on my feet. Everyone wants to be understood. A little bit of empathy from the community can go a long way.

• Who has been your inspiration as a warrior and as a support provider to other warriors?

Two people have been very inspirational for me. First, is my father. He suffers from a degenerative neurological disorder due to which he is in immense pain and is also losing his eyesight slowly. Still, he works very hard and looks after everyone else (not just financially). He still manages to laugh and enjoy himself.

The second person is Prof. (Dr.) Shamnad Basheer, managing trustee of my organisation, IDIA Charitable Trust. He unfortunately is no more. He was battling a horrible illness but still found time to do great work that helped hundreds of people. He was a very learned man and touched many lives. He was always kind, encouraging and patient. He also would take out time to laugh and have a good time.

Chronic pain is a battle we will fight every day, for good or for worse. Don’t forget the good things in life just because of your health condition.

• What is your message for fellow chronic pain warriors?

Please take care as good a care of yourself as your circumstances allow. Take time to get in touch with your body and mind, and then work towards healing them. World would be both cruel and sometimes, kind. However, we can together work towards increasing awareness for better understanding of our illnesses. Chronic pain is a battle we will fight every day, for good or for worse. Don’t forget the good things in life just because of your health condition. I wish you all the best.

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.