In continuation of our previous article on CRPS Awareness, today we will be discussing the challenges of living with CRPS and also talk to few CRPS warriors about their life.
Besides the physical aspects of CRPS, the emotional aspects of the disease are profound and often overlooked and neglected. Living with a disease that is so poorly understood in the Indian context, where there is not only a lack of awareness amongst the public, but also amongst the medical fraternity. This can contribute to feelings of constant uncertainty and despair resulting in improper management of the condition. Vatsala, a chronic pain warrior, aptly shares, “Your health begins to walk on egg shells and when that shell breaks, you .“
Further, medical professionals who are aware of CRPS in India, often possess an outdated understanding of the complex diagnostic criteria and information further contributing to an uncertain prognosis of the condition. Coming from an individual with a lived experience of a chronic pain condition, Vatsala also shared, “…I remember I had already looked up for my symptoms on the internet and it was directly telling me that “I HAVE CRPS”. When I told him about it, he said, “It is not possible, especially not at your age (I was 19)’.
Similar views are echoed by Dr Anubha Mahajan, a CRPS warrior herself who is also the Founder of Chronic Pain India, “It was 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. 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.” These experiences depict that there is an elephant in the room, the uncertainty in receiving the right and timely diagnosis of rare chronic pain conditions.
Living with constant uncertainty and being repeatedly told that it’s just “in your head” can have a detrimental impact on an individuals’ self-esteem, ability to continue work or attend school, maintain social and romantic relationships, financial status, collectively working against contributing to the development of mental health issues like anxiety or depression. Further, Vatsala, shares her personal experience of how she faced numerous struggles at work due to her illness, ‘’I recently lost my job in a private company…All they saw was my illness, but not my strength with the illness. It was unfair because I have seen so many companies recruiting handicapped people and providing incentives to those who have special cases and above all, understanding them.” This reflects on the harsh truth of living with a chronic pain condition in a society which lacks empathy and awareness.
Treatment options available for CRPS in many aspects still remain archaic ranging from ketamine infusions, heavy medications, and sympathetic nerve blocks amongst many others. These options are often prescribed with the goal of offering temporary pain relief rather than curing the whole person and improving the quality of life. As it is known that CRPS affects an individual in more ways than one and, the good news is, this gives us the unique chance and opportunity of treating the condition through several avenues. These can include simple steps like seeking credible information and education, maintaining a healthy diet, practicing aromatherapy, regularly moving and exercising, maintaining a gratitude diary to get through particularly difficult days, nature walks, or just simply asking for help.
While yet another pain warrior Meenakshi, rightfully talked about finding solutions, ‘‘It’s hard on yourself and your family to keep looking for solutions and the exasperation when it doesn’t work. This is where support groups help in education. Yes, it’s tough getting a diagnosis and the economics of it all is quite challenging. But you have a safe place to vent. Education of the patient, family, and caregiver should be a constant process.“
Every day may feel like a new challenge and feeling like giving up is the only solution. Seeking support and maintaining important personal connections can serve as a ray of hope that you are not alone and are always cared for making this arduous long battle against CRPS a little easier to manage.
Apart from therapies and medication, one thing that also helps in this battle with Chronic Pain is a support group. If you or your loved are a Pain Warrior or a caregiver, join our support group today to interact with other pain warriors. Support groups help is the journey towards living with pain, as pain warriors help each other with their own experiences as well.
Also,if you want to share your story of living with chronic pain with us, feel free to reach out to us.
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About the Author:
Punyyaa Anand is a girl with varied interests. Right from cooking gourmet food to looking after her siblings to reading spiritual texts to aspiring to be an independent researcher. She plans to pursue PhD in Public Health in a few years time.