On a scale of 1 to 10, how much pain are you in? Ever been asked this question?
And when you did manage to condense the vague excruciating sensation into one of ten digits, were you dismissed?
"I live in pain twenty-four seven. It's a chronic neurological condition."
"They label it as fake, saying you are cheating, you always have an excuse."
This is the life of a chronic pain warrior.
In this podcast, Anubha Mahajan, Swati Agrawal, and Pooja Priyamvada, three chronic pain warriors share their stories of living with the debilitating invisible illness that takes over every aspect of one's life.
Listen to them speak of their journeys–of denial, dismissal, stigma, prejudice, acceptance and adjustment, and hope.
Underneath the Invisible Illness
Chronic pain is any pain that persists for longer than a few weeks with no apparent reason. They are usually caused by neurological misfiring and often can't be resolved with painkillers.
Imagine living in constant severe pain, and now imagine no one around you believes you when you tell them you're in pain.
"When something is not visible, it is sometimes beyond the understanding of regular people. It's a major challenge to make your friends and family understand what you're going through," says Anubha.
If you see a person with a visible injury and they tell you they are in pain, people would believe them. But if a person with no injury says the same thing, it's different."Anubha Mahajan
"When it's invisible, they start labeling it as fake, you are cheating, you always have an excuse, and so invisible pain is further invisibilised," says Pooja.
"There is also stigma because people don't like talking about pain, because they think it's negativity," she adds.
It isn't just regular folks, stigma and negligence also comes from medical professionals.
"The neurologist who diagnosed me with fibromyalgia told me to go Goolge it, when I asked him about the condition because I had no clue."Swati Agrawal
How Pain Impacts Your Mental Health
"I think pain and mental health issues are a vicious cycle in the sense that pain affects your mental health really badly, but your mental health also affects your pain," says Swati.
"It causes stress, for me, it causes a lot of self image and self confidence issues," she adds.
"It makes me feel like a faliure because I cannot do as stressful a job as many of my peers."Swati Agrawal
"When I'm stressed, or don't get enough sound sleep, I have more of the chronic pain," she says. "And it becomes very hard to break."
Coping, Surviving, Living
"The biggest challenge for anyone living with pain, is to make peace with it," says Anubha. "I don't want my illness to be my identity."
"There are good days, and there are bad days, and you have to choose how you take it," she adds.
Swati says that one of the main things that help her cope with the pain is managing her stress levels, sleep cycle and pacing herself.
For Pooja, it was knowing her correct diagnosis which proved to be a huge step forward towards managing her illness. Because now she says, she can rely on the correct drugs and not have to injest mystery medicines that often did more harm than good.
All three of them speak about eating healthy, and exercising when you can.
Anubha talks about how a holistic multidisciplinary treatment has helped her.
"Just knowing that you're not the only one in pain, can be so relieving. I hope we are able to build a strong community which is hard and this invisibility turns visible with time."Anubha Mahajan
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