It all started for Dr. Anubha Mahajan in 2014 with the horrors of an ankle pain that soon snowballed into a seldom discussed albeit extremely painful condition, after a surgery to correct her ankle went horribly wrong.

As she herself recollects, the entire ordeal led to “a year-long journey from one doctor to another in Delhi NCR, with no clue what I was suffering from and how it’s going to impact my whole life ahead. It was somewhere around June 2015, I met my first pain specialist who diagnosed me with Complex Regional Pain Syndrome (CRPS). Before that, it was just doctors mocking me and questioning me before coming to the wrong diagnosis.”

While the fact that she was a dentist and had ample knowledge in medicine helped Anubha understand her condition, mere understanding of the pain wasn’t sufficient to bring much succor. However, things changed for her when she finally met a woman with the same condition in her yoga class.

“That was the first time I came across another pain sufferer face to face and it gave me a feeling of relief and content inside. I did not feel alone,” writes Anubha. Soon enough just the thought that she could bring in other people’s life the kind of understanding and help that she herself had been devoid of as a chronic pain survivor drove her to start Chronic Pain India (CPI), a Delhi-based organisation that has been working for chronic pain sufferers or, as they call them, “warriors” across the country.

“Chronic pain has been misunderstood and misguided for decades, leaving the sufferers in physical & mental trauma. We tend to be the voice to this cause in India and will keep on focusing on bringing a change through raising awareness,” reads the about section of their website.

At Chronic Pain India, their aim is to “build a strong community for every chronic pain sufferer in India, suffering from any illness.” The aim also is to share the experiences of these sufferers so that the general population can have an insight and better understanding of the same. The platform can also be used as a source of information by medical practitioners to understand the perspective of the pain sufferer and thus gain a better understanding of the same, so that they can come with a holistic approach towards their treatment.

In a recent interaction with Anubha, she talked about the gendering of suffering when it comes to patients of chronic pain, the mental health of these patients, and the work the CPI is doing in the direction.

Here are the excerpts:

When we talk about healthcare in India, there exists a gendering of suffering and somehow women suffer more in silence. Also, when it comes to challenges like chronic pain, women are often not believed and are treated as if they are just throwing a tantrum. Could you please comment on this gendering of pain?

Yes, there is a gendering of pain. According to medical studies and surveys, there is a predilection against women, which I think is the primary reason. Sadly in our Indian society and culture, women are not treated well, especially in rural areas. There’s a study that states 61% of people that were coming to primary health centre were coming for pain. Females from affluent and educated families go to pain specialists hiding it from their families with almost no financial support as pain is misunderstood.

How do you think this problem can be approached? How can we do away with this gendering of the pain?

By creating awareness! We need to educate more people about the consequences of ignoring health. We need to tell women not to ignore their health. They need to remember that it is okay to care for yourself, to keep yourself first at times, especially when it comes to matters concerning your health. They need to understand the importance of regular checkups and getting proper medical help. Women are socially conditioned to develop a ‘chalta hai’ attitude when it comes to anything pertaining to them and that needs to change. They need to keep themselves thoroughly informed.

However, the moment you say this, a lot of people respond by saying “But where and how do we get the information from.” And that is the reason why Chronic Pain India was formed. It’s run by pain warriors for pain warriors. The reason why we are trying to reach out through social media is that we want to reach every household and every silenced voice in India. We want to tell them that “You are no longer alone in this battle. We are there for you. We want to be your friends, your confidantes, your support system, and your guide.”

As you already mentioned, individuals suffering from chronic pain are certainly going through a lot of internal anxiety. Do you think there is a need to separately address the mental health of these people? 

Yes, definitely. Chronic ailments and mental health are interconnected, even research has proven that. When you are suffering from a chronic pain condition or chronic illness for a long time or you have just been diagnosed with it, your life takes a 360 turn. You go through a lot of changes in life both personal and professional. A plethora of changes start occurring which catch you off guard and others don’t understand what’s happening with you. Even if they want to, you have to explain a lot and either way it takes a toll on you.

In situations like these, one is bound to feel sad, vulnerable, lonely, neglected. All these factors together contribute to triggering anxiety. Eventually, the constant pain starts affecting you mentally. Thus, taking care of one’s mental health is equally as important as physical health.

I have come across so many incidents where people are going through trauma because of their pain which remains unsupported and is thought of as presumptuous. Simply because it is an invisible illness, it doesn’t mean it doesn’t exist.  I personally know of someone who is currently going through a divorce and cannot afford the expenses of both these issues. So she is cutting on her medication to go through life at the moment. Women also tend to develop suicidal tendencies because of constant pain and no support from their family.

In that case, is India sufficiently equipped to cater to their mental health needs?

No, unfortunately for all of us, India is not. You’d often come across doctors who won’t bat an eyelid before saying you, ‘Your ailment is all in your head. You’re faking it. How is it possible?”

It is a sad state of affairs as most of them in India are aware of cognitive behavior therapy but not of Chronic Pain. It sounds like an alien term to them wherever you are in India. They can help you with your anxiety but since pain and other symptoms are other factors too they are not fully equipped to treat the condition properly. Some psychologists feel they are not adequately equipped to handle you. With that comes another factor where there are certain psychiatrists or psychologists who might know of it but their session costs are so high that most of the people can’t even think of affording it.

Dr. Anubha with her community of chronic pain warriors.

Let’s also discuss law and insurance. Can they be somehow involved to help the patients of chronic pain with their situation?

Medico-legal laws and health insurances are still operating on an obsolete mechanism where according to them a chronic illness is either asthma diabetes etc or cancer. Most of the health insurances are not even covering daycare processes. And if you are not going to a hospital and going to a private clinic, most of them don’t work. If you are suffering from chronic Illnesses or CPCs you need to take a lot of medicines on a daily basis and none of these are covered in the insurance. If we are talking about the number of medicines, day care procedures, and blood investigations, etc. it adds up to a huge sum and again, unfortunately, none of it is covered.

Having discussed the pits and the challenges, how is your community empowering and supporting people with chronic pain? Do you also offer medical and legal support?

We are trying to build a safe haven for all the chronic pain condition and chronic illness sufferers by providing them support in the form of a closed support group on Facebook. We are also trying to help them in getting their diagnoses and treatments on time if they need it. Most importantly, we are constantly trying to reassure them that you are not alone. Currently, we are working on building a physical support group system and once we have enough funds, we will definitely cover the medical and legal sides of this issue. We want to reach out to one city/town/village at a time and help people with the diagnoses and treatment in whatever way we can.

And how about you? How has community support impacted your life on a personal level?

When I first launched the Twitter handle of CPI and a free blog post on Word press, I was trying to help people from the sheer realisation that there are many people out there who are suffering how I am suffering. Being a doctor, helped me to a great extent in understanding my illness. However, it wasn’t the case with everyone. With time as I connected with more and more people, I realized that I was able to provide the kind of help to these people that I myself sought as a patient of chronic pain. And every time a person messaged me and told me that they are doing better or thanked me for being there as a support, it felt great.

I have seen many people get back to their feet despite their issues, people who had quit their jobs and were bedridden, with time started motivating themselves and started getting back to life. It is a feeling of true joy and contentment. I won’t deny that sometimes I do need some time for myself too because at the end of the day I am also a chronic pain warrior. I have my own set of treatments, my symptoms, my flares and attacks that I have to deal with too but over the time I have been blessed with amazing volunteers and people like Namrata who were there to have my back. It has never felt like a task or a job I have to do, it feels like in some way I am giving back to my community and slowly trying to bring a change, one step at a time.