Fibromyalgia Has Been A Catalyst To Understand What I Truly Value

Nine years ago, Shruti Singh, 39, was diagnosed with fibromyalgia, an invisible chronic illnesses, that changed her identity from a career woman and passionate outdoor person to a homebound individual. Today, with active rehabilitation she has taken charge of her body once again and now devotes her energy in enlightening others with the debilitating condition.

Who am I

I am Shruti. Up till a few years ago, my career and my profession defined me. I introduced myself with what I did for a living. That was my identity. Looking at it today, I feel like many of us define ourselves with things we do or the relationships we nurture so I want to take this opportunity to really introduce who I think I really am.

I am a straight forward person. I absolutely enjoy outdoors - running, hiking, cycling, swimming, you name it. I thrive on challenging and competing with myself. I love the written word. I feel I can sometimes do a better job expressing myself through writing than talking. I enjoy poetry. I am more of an animals’ person than a people’s person. I am also a few people person - those I connect with, I connect deeply. Sometimes I try to paint. Over the last few years I’ve been on a journey of self- awareness, learning and healing - both mentally and physically; and since have developed a passion for holistic health and fitness.

Early symptoms

I was diagnosed with Fibromyalgia Syndrome (FMS), a nervous system dysfunction disorder, 9 years ago. Widespread pain, fatigue, sleep problems, digestive issues, brain fog are some of the symptoms of this disorder. It is often referred to as an invisible illness since all its symptoms manifest in a patient in an unseen manner. There are no tests, no bio markers (up till now) that can prove the existence of this illness.

After dealing with some consistent pain issues, I got myself to a doctor who contrary to regular practice, was able to immediately diagnose FMS. However what it was, what I was dealing with and could expect, how I could manage this condition, what were the things that could help, how it might effect my life, lifestyle and livelihood - NONE - of this information was shared. I was left to my own devices and the internet to understand what I was dealing with.

From denial to acceptance of Fibromyalgia

When I did get some details on internet, my first reaction was denial. I continued to seek various experts in the hope that the diagnosis would be different. No one could find anything wrong with my body, yet I was in debilitating pain, had severe digestive issues and an all-consuming fatigue that refused to go away. Each doctor asked for previous reports and opinions, then almost relieved agreed with the FMS diagnosis and prescribed medication. Reluctantly I gave in, accepted FMS and 3 years after my initial diagnosis started the medication. In these 3 years my quality of life had further deteriorated but the medication phase seemed worse. I was mostly home bound, had trouble getting out of bed and getting through my days. I would barely recover from one flare and be into the next one. This was perhaps the darkest phase of my life. I was overwhelmed, broken, desperate and lonely in this fight. Chronic illness, is a lonely road - even when one might have the best support system; the depth of what one goes through can only be understood by those suffering.

Though what I am eternally grateful for is the unwavering support and understanding I got from my husband and family. My husband never questioned my pain or diagnosis. He was my comfort and my strength. My family, even though they didn’t quite understand what was happening, were mindful of not pushing or forcing me into any line of treatment. They were as anxious for answers as I was but never overbearing or unsupportive.

Grief and hitting rock bottom

The next two years passed in a sort of daze. I realized the medication was not effective in dulling the pain or the discomfort in my case and so continued the journey of seeing different doctors, changing the drug combinations and dosages, getting physiotherapy and living with hot and cold packs. I had to let go of my aspiration (of that time), give up my job, move cities to be close to family and hope things would get better. They didn’t. I remained at my wits end, upset, angry, overwhelmed and in tears ever so often. Grieving for a life I seemed to have lost. Angry at the universe for being handed this illness.

I now realise, this rock bottom was my turning point. I took the decision of stopping medication, to try and find answers in movement and activity. And I got lucky. After seeing some of the best doctors, pain specialists, physiotherapist in the country, I found a coach who understood chronic pain and worked on rehabilitation. And thus began the journey.

Active Recovery and Rehabilitation

We worked with what is known as active recovery or active rehabilitation (The kind that are more common for limb loss, sport injuries or trauma recoveries). It was small baby steps and we were both learning as we went along. I was the first case of FMS for my trainer. It has been 4 years since. Today I have no need to medication. I rarely have flares. When I do have them they pass with some very basic movement and rest interventions. Together we’ve developed a protocol that can help anyone else dealing with this illness. My life has come a complete circle, where I am the fittest I have ever been, doing things that I’ve always dreamt of doing. Though I have to be mindful of what and how much I take on, the biggest win for me is that I again have the ability to choose what I want to do.

Searching Online for Support

The first thing I did on my diagnosis was look it up online. All I got was a list of symptoms and the fact that there is little to nothing known about the cause and possible cure of Fibromyalgia, leaving me with a sense of hopelessness. A decade ago there was hardly any social media, or online support groups around chronic illnesses. I felt pretty much on my own. About 4 - 5 years ago, I began to see some Instagram handles around FMS. Many of these are spreading awareness but I find that the tone and messaging in most cases is that of hopelessness. They mostly focus on how those suffering continue to live affected lives, limited and crippled by FMS.

While I think it is key to spread awareness and for regular folks to understand what life with FMS looks like, it is also critical to step out of the victim mode to begin making conscious changes to see some improvement. It is only when I refused to be the victim and actively started to work on what could make me feel better that things began to change for me.

Educating and sensitising people

It hasn’t been a smooth transition to the lifestyle I now lead. It has been a tough and sometimes frustrating road to sensitising those around to understand this illness and how it effects and impacts my choices. The toughest though has been lack of understanding by the medical system on how every little thing that sometimes might be completely harmless in their field and knowledge, can have a huge cascading effect on management and healing of FMS. One never imagines having to educate the so called experts on your condition.

For the others - extended family, colleagues and professional associates, it has been a long journey of education and talking about my condition even when the interest is superficial. I realised early on that unless more and more people begin to talk about invisible chronic illnesses, there is never likely to be any awareness. So instead of dismissing it, I began to embrace every opportunity to answer questions around how I was feeling and what FMS was. This is turn was cathartic for me.

My favourite analogy has been that of an electrical circuit. Like any gadget, our body has lot of wiring in form of the nervous system that we do not see or understand. When for any reason the wiring gets frayed, the system breaks down. FMS is a bit like that - a fault in our wiring. Just as we need to recalibrate to address the overload and tripping of the wires, to address FMS, we need to change lifestyle, and understand the role of diet, movement, stress relief etc.

Effects on social life

The early days of dealing with FMS were quite frustrating. Bosses, colleagues, friends and family, like me, were used to a different version of me. When people hear that you are unwell, they expect you to be better at some point.. So even though conversations help in making them aware, there are no set ways on how to integrate such a person into corporate or professional work. There many hard feelings for cancelled plans and seeming ‘unreliable, anti-social, unpredictable and unprofessional’

Initially these tags hurt. They added more angst to my already fragile state of mind. What helped was stepping away and taking a complete break, even though at that time it seemed like a loss of identity and future. Stepping away helped me focus squarely on my health and healing. It helped me evaluate what I really valued in life.

Fibromyalgia – my baptism by fire

In ways now, I have begun to see FMS as my ‘baptism by fire’. It has been a difficult, challenging phase, but it has also been the catalyst for this journey I am now on. It is the reason I am at peace and content today. FMS removed the various distractions and put me on the path of that which is truly important to me, which gives me joy and makes me feel alive.

Learning to not dwell on what has happened but focusing on what can be done from here on has been an attitude shift that has helped me the most.

I now write on social media to reach more people suffering from this illness, to show them there is hope. I write simplified science based long articles, leaving them on internet in the hope that they will create a better understanding of what this illness is and lastly, when someone is ready to look for help and change their situation I handhold them through counselling and coaching sessions. 

A typical day for me

I start my days very early, to soak in some peace and tranquility, do some restorative breath practices and get a handle on my day before the world wakes up. My mornings are purely my ‘me time’. I sometimes write, paint, or get my workout done, play with my dogs all before breakfast.

Most of my days are flexible on things to do. I look into organising my household, vet visits for my dogs, any writing assignments that I may have taken on, counselling and coaching for other Fibro-warriors, social commitments, friends and family time, some more movement in the evenings and breathwork before I call it an early night. A nap sometime in the day is mandatory for me. It helps me recharge my batteries and recover from any fatigue setting in.

Substitute NOT Add.

The one principle I have internalised is that I never pack my days to the brim. When something unplanned or urgent comes up, something else has to make way for it. I do not take on more than two things to do per day. It keeps my stress and energy levels balanced.

Of course there are days, when everything falls into my lap at the same time. Those days, I get through as best as I can, knowing that it might take me a couple of days to get back into a state of balance.

Advice to people in a similar situation

I often come across people in pain, who are looking for solutions but also equally often they want a quick fix - something that can help them in 1 week, 2 weeks or 4 weeks. But here’s the thing - there are no quick fixes. Symptoms are your body telling you something is wrong. Switching them on mute is not equal to healing. Fixing symptoms is required to get you to a place of starting the work, the healing work. Patience and consistency are the bedrocks of this healing work.

The most annoying moment: 

Till date, seeing a doctor, having to educate them about your condition and them still being unreceptive to your inputs / being dismissive / or them regarding what you know as unimportant vs what they are saying.

The best thing someone said:

You are amazing. Don’t forget that.

My biggest support:

My husband.

Shruti blogs at https://fibrolifelessons.wordpress.com/2021/08/28/fibromyalgia-101/

And can be reached on instagram @fibrolifelessons