Artwork courtesy: Julia, who is journalling her life on canvas

Imagine this: You spend ten hours in bed struggling to fall asleep but still find no respite. You wake up tired and your body is aching all over. Your day has just begun and you already feel exhausted. It is difficult to follow through daily chores like shampooing your hair or going to work due to pain. Asking others for help makes you feel like a burden. You compare your life with those of others your age. You see them accomplish so much more than you every day. You did not expect to face such challenges at the age of 32. You often feel angry, disappointed and resigned to your fate. In addition to these issues, you have digestive problems, brain fog (cognitive difficulties), and myriad other difficulties. They all make you feel incompetent.

I have been diagnosed with two comorbid conditions – Fibromyalgia and Bipolar Affective Disorder Type II. I run a Fibromyalgia support group in India and I am writing this article from the knowledge-based on my own as well as other people’s experiences living with Fibromyalgia in India. 

Fibromyalgia, and other similar chronic conditions, often involve many emotional pitfalls. I feel guilty, especially because of not being able to do things such as work or attending family events or meeting friends. Since they are invisible illnesses, I feel weak and pathetic as I do not have something “real”. I am made to feel like I am making excuses or creating a fuss over nothing. It has hugely impacted my sense of self-worth and confidence. The feeling of not being good enough is a constant. I often experience anger, resentment and sadness as I have to deal with an illness that is chronic. It’s frightening to think that I am stuck with these symptoms forever. 

After I was diagnosed with Fibromyalgia, I lost my job. Losing my career, which I had worked so hard towards, was even harder for me to deal with than the diagnosis of a chronic condition. I also lost a really long relationship at that time. I had to sell my furniture and move out of Mumbai, away from my friends. I moved back in with my parents. As a result, I slipped into depression. This further worsened my symptoms. No medicine would help. I went to consult various doctors but no one could help me. I started having crippling migraine headaches as well.

Because of all this stress, my condition just kept getting worse. Stress stiffens the body and increases pain and fatigue. This, in turn, leads to depression, stress and anxiety. It’s a vicious cycle that is difficult to break. 

Since they are invisible illnesses, I feel weak and pathetic as I do not have something “real”. I am made to feel like I am making excuses or creating a fuss over nothing. It has hugely impacted my sense of self-worth and confidence. The feeling of not being good enough is a constant. 

Things changed for me when a neurologist referred me to a psychologist. On her recommendation, I was prescribed antidepressants by the psychiatrist. This pushed me towards hypomania, a state of bipolar disorder marked by increased energy, anxiety, inability to concentrate, grandiose thoughts, among others. Eventually, I got diagnosed with Bipolar Affective Disorder (BPAD). I went from doctor to doctor to learn to manage my BPAD. It took a combination of right medicines, therapy, a support group and self-introspection to be able to deal with the mood swings and the emotional trauma connected with Fibromyalgia.

Bipolar Disorder and Fibromyalgia can be seen as co-morbid conditions. An overactive lifestyle, both before and after the onset of Fibromyalgia, has been linked with BPAD. This is followed by prolonged periods of rest. A study has shown that one in five patients of Fibromyalgia has BPAD. It is now advised that people living with Fibromyalgia be screened for BPAD before antidepressants are administered.

Clearly, we need a combination approach in order to deal with Fibromyalgia that looks at both physical and mental health. A combined approach that focuses on healing through relaxation and changes in lifestyle is essential. 

A Psychosocial Approach to Fibromyalgia

We know that physical and mental health are interrelated. Cognitive behaviour therapy (CBT) has proven to result in significant pain reduction in people with Fibromyalgia. “The rationale for including psychological therapies is not for the treatment of comorbid mood disorders, but rather to manage the many non-psychiatric psychological and social factors that comprise pain perception and its maintenance”, a study reports.  

Drawing from my own history, I would like to divide these ‘non-psychiatric psychological and social factors’ into two groups – post- Fibromyalgia and pre-Fibromyalgia. 

I faced physical and emotional abuse throughout my childhood. I was also subjected to sexual abuse at multiple instances while growing up. Another major occurrence soon before the onset of my Fibromyalgia symptoms was a major car accident. 

Several studies have shown the connection between trauma and Fibromyalgia. For example, a study reports that “those with fibromyalgia had significantly higher lifetime prevalence rates of all forms of victimization, both adult and childhood, as well as combinations of adult and childhood trauma… Trauma severity was correlated significantly with measures of physical disability, psychiatric distress, illness adjustment, personality, and quality of sleep in patients with fibromyalgia…” There is no way to know for sure what triggered my condition, but these factors definitely had a role to play.

Another stressor that contributed to the worsening of my condition was working in the corporate/banking law sector, where there was substantial work stress and long working hours. We would often work till two-three a.m. and sometimes, even as late as seven a.m. the next day. There was no access to good counsellors. The onset of my Fibromyalgia symptoms happened during this period. 

A lot of other people have had similar experiences, as is clear from the various conversations I have had with the members of my support group. Capitalism sees people as commodities to be exploited. One’s sense of self is closely linked to productivity at the workplace. Each person is forced to outdo others by working longer and harder, deprioritising their health and personal life. It is worrisome and disappointing to see a work culture which is making people sick, anxious and robotic.

As is evident, various non-physical and non-psychiatric factors underlie conditions like Fibromyalgia. It is also more prevalent among women who have higher risks of facing abuse in their lifetimes than men. They also face gender discrimination due to patriarchal structures which strains their mental and physical health. Is it then surprising that Fibromyalgia, which is linked with psychosocial factors, is more prominent among women?

In Fibromyalgia, chronic pain, fatigue, sleep disturbances, cognitive difficulties and other similar challenges are an everyday reality. Going through each day is a struggle as one has to learn to carry out day-to-day activities withstanding substantive pain and fatigue. Many people lose their jobs and relationships due to their physical health, which in turn affects their mental health. 

Depression and anxiety are common symptoms of Fibromyalgia. However, in India, the understanding of the correlation between physical and mental health is substantially lacking. In such a situation, the Fibromyalgia warrior ends up going to multiple doctors who prescribe them drugs and most often, it involves overprescription. Some of us struggle to find even one good doctor and thus, we are left to fend for ourselves.

There is no one specific cause of Fibromyalgia. In fact, it is called a “syndrome”, not an illness, because it is largely a group of similar symptoms which are clubbed together. This is extremely problematic because it leads medical professionals to focus on universal medicines for a similar set of symptoms when each Fibromyalgia warrior is different and has unique triggers.

My Path to Living With These Conditions

It took me years of counselling and finding the combination of right medicines before my mood could stabilize. After my mood stabilized, my Fibromyalgia symptoms decreased as well. I now work a full-time job, even if it is from home. I also take care of two cats and enjoy socializing on weekends. An approach that combines physical and mental health did wonders for my condition. 

Factors like counselling, exercise, a nutritious diet, proper sleeping schedule, among others are crucial for managing Fibromyalgia symptoms. Therapy plays an important role in processing the emotional pitfalls that accompany it. Yoga and meditation are other handy tools. Hobbies, art, writing, support groups, socializing etc. are also very crucial in managing it. In my experience, medication alone has very little impact on helping with Fibromyalgia. We need to find and work on solutions that focus on improving one’s quality of life.

Over time, I have stopped resenting my condition for influencing my life the way it did and instead, I now feel proud of being able to work and participate in awareness-raising and sensitisation of mental health issues and other invisible illnesses. I am also learning to accept that I have a life-long condition that will not go away with popping any number of pills. I care less about what others think and am happy to lose people who are toxic and unaccommodating of my condition. I have stopped comparing my life with others’. I am lucky to have supportive friends and family. Therapy has helped me acknowledge all of this. Additionally, self-reflection and writing have significantly helped me find peace and happiness. 

As I have learnt to accept my condition, I have also learnt to manage it better. My symptoms have become more manageable with time. A holistic approach to treatment that looks at mental and physical health together as well as non-psychiatric psychosocial factors are the key to managing Fibromyalgia. Let’s hope such methods of treatment develop soon.

Swati Agrawal works as a Director (Operations) at IDIA Charitable Trust. She uses her own experiences to create awareness about mental health and invisible illnesses.