Joining us today, in our journey of celebrating Pain Awareness Month we have Ms. Meenakshi Venkataraman. Let’s listen to her story as she invites us to be a part of her world and shares her experiences of living with pain.
Hello, I am Meenakshi, though I prefer to be called Mina. I live in the Nilgiris, atop a small hill with three dogs. It was while I was pursuing my PhD in Ecology in the US where I met my companion for now 22 years, Chronic Pain, after an accident. I somehow ﬁnished my PhD and joined a Research Postdoctoral program, but had to leave as my chronic pain became an issue. Moving back to India, I met my husband and moved to Bangalore. Here, I joined work as a consultant with small organic farmers and working on watershed management, but chronic pain intervened and commandeered my life to move to cooler climes.
At the Nigiris, I became an armchair do nothing farmer, an active Rotarian with interests in environmental sustainability and an advocate for green menstruation. I also found myself coordinating communications and media for the annual Literary Festival. In all these ventures I have been deeply respectful of my limitations, but take calculated risks to enjoy what I can. Central Pain and I are now joined by a diagnosis of Parkinson’s. Let see where my journey leads. In life, I have been fortunate to have had a very positive outlook, and a drive to be independent.
Isn’t she inspiring? So without much ado, let’s know more about her.
- What has been your personal tryst with chronic pain?
In 1997, when I was 25, and just starting my PhD in the US, I was a pedestrian hit by a car driven by a child on a joyride. My life changed that minute, with severe pain in my right side. I thought it was just the accident. What followed was a nightmare of TMJ problems and suddenly having burning pain in right leg and hand. Numbness followed. The vagaries of insurance and seeing doctors based on health insurance ﬁnally landed me with a neurologist who diagnosed it as reﬂex sympathetic dystrophy and after a couple of years of struggling, managed to get a diagnosis of Central Pain Syndrome. Gabapentin was just being introduced in the US and my doctor managed to get me on patient trial bringing me some relief. I was also put on oxycodone for pain. This resolved my physical symptoms.
A job helped ﬁnancially, but the hot weather in Florida was something I couldn’t cope. Moved back to India. I had to get detoxed of my oxycodone as it wasn’t available here. Initially, the doctors refused to understand central pain syndrome and I was referred to psychiatrists who were trying to ﬁnd reasons for my pain. I ﬁnally met a neurologist who understood to an extent what I was going through and after combinations of different medicines, therapy and physical therapy, I managed to lead a somewhat productive life in India. I have had the luxury of taking things easy when I couldn’t work.
- How do you think a long-term illness or pain condition changes one’s life?
It shatters and reforms you into a new being. You feel completely adrift. This is when you want to withdraw and feel sorry for yourself. This is where you rediscover and reinvent yourself.
- As a long-term pain warrior and activist, what have been your peculiar challenges? How did you handle them?
I have found either being treated with kid gloves or told how it’s all in my head. People cannot understand pain especially if you look okay. I also get a lot of grief for over medicating. I have muscle tightening and numbness in my leg. Getting onto buses, ﬂights, or even cars is tough on some days. It’s amazing how little patience people have and think my cane is just an accessory. Either I’m told why can’t I use a wheelchair service on ﬂights or why do I have to use public transport… I ﬁnd quiet determination to be my ally then.
- How do you think a chronic pain warrior’s mental health alters over the years with constant incurable pain? Share personal experiences/ observations.
There is change, with a more inward focus on capabilities as well I think sensitivity to one’s condition and increased empathy to others in similar situations. From an independent person, I became more accepting of help from strangers, neighbours, friends and family. From a can-do person, I became a can do, but slowly and at my pace, with some modiﬁcations person. My time when I felt alright became very precious and I became very conscious of choosing what I would like to use it for. I tend to appease my pain gods in my body ﬁrst.
In relationships, this has been tough as there is a ﬁnite amount of mental and physical energy available and this tends to make my expectations in a relationship more demanding than if I was well. Invisible illnesses create more strife I feel in ﬂares, as we tend to look very normal. My cane is a show of my inability to walk or stand too well but that was usually seen as a decorative piece by many because of my age. I love applying make-up, it makes me ready to face the world. But the world in most cases cannot understand why I look so put together if I were sick. Nowadays I don’t care, I dress for myself comfortably and the lipstick comes on with a vengeance.
- You have been so active in public life, do you think chronic pain affects women differently than men, if yes, how? Please share a few instances.
I have been asked if my pain is due to female complaints or If I’m in pain because I’m fat. Mostly told if I do yoga, exercise etc pain will subside. The cane doesn’t look great in the picture, keep it on the side. Can you imagine someone telling a man that? Gender is an issue in non-familiar situations. They don’t want you to exert yourself. Someone else can present. Or over obsequious- madam, you are able to do so much with the bad leg. Or making my situation to seem so difﬁcult to accommodate, like chairs. Earlier, I used to push to prove them wrong. Now, I just ignore and do what I have to.
- How does awareness help in management of pain in the long term personally and socially?
Awareness through internet groups and through articles in support group pages gives us a sense of community. In chronic pain, you are so alone and people doubt what they can’t see. You in your own low moments also give in to self-doubt. A tribe of cheerleaders in your support group give you the boost to be yourself in pain and gain conﬁdence in yourself. Socially, events organized by support groups like what Chronic Pain India organized in Delhi and Bangalore also lets you meet people face to face. In today’s communication era we are no longer alone and can be social even in our ﬂare days.
Socially, events organized by support groups like what Chronic Pain India organized in Delhi and Bangalore also lets you meet people face to face.
- What roles can families, communities and caregivers play in a chronic illness journey?
I have been blessed with a very understanding family. I know families can be a boon or a bane. Doctors must also advice psychological help for caregivers and family members to cope. Speaking from my perspective wherein I have had access especially after I returned to India to all that’s available through my family, there is not so much treatment available that’s a cure. Yes, I have had medication that gave me instances of some pain relief, I feel in many ways I shouldn’t have let so much experimentation done on myself. 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.
- What would you like to say to other chronic pain/chronic illness warriors?
Don’t give up on yourselves. Educate yourself, your near and dear and if you have the energy anyone you meet. Don’t short change yourself. Do not stop socializing however irritating or irrelevant it might seem. Social connectedness in the physical sense helps feeling part of a community. You don’t have to win an Olympic gold if you don’t want to, but to achieve one day of mobility at least for me is precious. Small goals, that are sustainable, give you the boost. Keep a pain and thoughts journal. It helps. If you can’t afford therapy, there are support group friends. We are a resource. Use.
P.S: All images used are copyright of Ms. Meenakshi Venkataraman.
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.