Chronic illness meant coming to terms with a new reality where I was no longer normal

My name is Swati. I have fibromyalgia, a chronic invisible illness. And this is my story.

It was supposed to be a regular working day, but I had taken the day off on account of my pain. It had become unbearable for me to sit up for even slightly a extended period of time. I had dragged myself to a top Mumbai hospital, where I was waiting to see a neurologist with impeccable credentials. For more than a year now, my life had changed. It started with annoying, but not intolerable, pains in different parts of the body – knee, neck and back. The weekends were usually spent with a strange heavy tiredness that made it impossible to get out of bed. At the start, I imagined it to be the result of typical corporate lifestyle involving long hours, lack of sleep, bad sitting posture, and irregular meals. But gradually, the pain became so bad that it was difficult to even type. Each time a finger would press a key, my fingertips would burn in response. I had seen many medical professionals, spanning a variety of specialties. The last of them, an orthopedist, had after a series of tests, told me that there was nothing wrong with me. I felt relieved until I saw his really solemn face. His next statement shook me: “There is no reason why you should be in such pain, there is nothing to show that.”

My worst fears were confirmed. I was overreacting. There was nothing wrong with me. I was exaggerating, creating a fuss over nothing. I had quit my job just because I didn’t have it in me to be a corporate lawyer. The seeds of self-doubt and guilt had been laid a while back, and they never really leave.

An invisible illness

Even today, every time I take a sick day, cancel a plan, or ask for help, I feel guilty. I constantly question whether I am using use my illness as a crutch, and there are enough people to affirm my worst fears. I have been called lazy, unhealthy, unmotivated and many other things since I quit my job, and moved back with my parents. I feel like I have failed, and not lived up to my potential. I know I should be proud of learning to manage fibromyalgia and living a productive life, but guilt was ingrained in me the day I got an invisible illness. It’s difficult to believe something that doesn’t show!

I was also scared. I hadn’t been diagnosed yet. I was scared that I was doomed to live a life of pain and fatigue in nearly a bed-ridden state. I was a young girl, away from my family, running from doctor to doctor on my own in a new city. It was tough. Somehow, I had gathered some last bit of determination to meet this neurologist (let’s call him Dr N). I did get a diagnosis, and it made things worse.

Dr N listened to me for a bit, and then straightway sent me for a test. He didn't tell me the nature of the test. The technician asked me to get my attendant, and was surprised to know that I didn’t have one. I would learn why in a few minutes. The test involved sending electrical pulses through my body. It was painful, and I was lying down on the bed for a few minutes after it. I pushed my frail body out of the bed and waited for the verdict. After a long wait, Dr N called me and told me that I had fibromyalgia. The word sounded scary, but I felt some relief at finally getting a diagnosis. Unfortunately, the relief was short-lived. When I asked some questions, Dr N told me to go google the illness. He told me my condition was not curable, so I needn't bother consulting him again.

I had depression and anxiety

If I was afraid earlier, I was now panicking. After being told that I had an incurable illness, and being shown the door, I became lost. I was terrified, and felt helpless. I went back home, but my family didn’t have any idea what to do either. I slipped into depression, and developed anxiety. Combined with body pain and fatigue, I started living largely in my room. I felt isolated as no one could really understand what I was going through. I was tired of hearing advice like–just go out, go exercise, just do yoga, try turmeric and what not. Somehow, the blame of an invisible illness was being thrust upon me, and even when I knew that I should shake it off, it would find a place inside as I would blame myself too.

Visiting a psychologist helped

I became a different person. I missed my old life when I would hardly stay at home. I was always out doing something or the other. I became irritable, and would hardly talk to anyone through the day. I had completely excluded myself. I had tried a few other doctors as well. Eventually, my headaches became really bad, and I ended up at another neurologist for my migraines. She referred me to a psychologist, and that’s when my journey of coming to term with a chronic illness began.

Like many other life changing occurrences, having a chronic invisible illness has a huge impact on our mental health. It requires coming to terms with a new reality, where you are no longer that "normal". For me, the most important aspect was acceptance. For a long time, I resisted my diagnosis. I read a lot online, and talked to people through online support groups. I accepted that I have fibromyalgia, and that it will be a part of my life.

This realization pushed me towards extreme depression and anxiety as it was difficult to think of living with chronic pain and fatigue (plus many other symptoms) my whole life. I am still working on it through increased insight into myself, and understanding my body and mind. Therapy is a very important part of my recovery. A very important realization for me was that I need to stop pining for my old life. I will have a new life, and I can’t measure its worth based on the life that has gone. I shifted into a quieter, more relaxed life. And I accepted that I have to live differently in many ways, but that doesn’t mean my life is any lesser. Now, I work at a great place that is inclusive, live on my own, and look after my two cats. I still struggle daily, but I find my life very meaningful. In order to learn to live with fibromyalgia, I had to know my body and myself. I feel much more at peace with myself. I feel that I also have greater empathy and understanding when it comes to others.

I think one of the most important factors in the mental health fallout from fibromyalgia was lack of awareness. I hadn’t heard of it before then, and I was completely scared and confused. There are no support systems in place except for a few virtual support groups. Medical professionals also discriminate against patients with chronic invisible illnesses a lot. Most of the people and society doesn’t understand fibromyalgia. They haven’t heard of it. We look fine. From disbelief to hostility, I have faced it all. And it’s tiring to constantly have to prove your reality. It is isolating.

I am a spoonie, a fibrowarrior, and I hope that there will be enough awareness one day that people, who are diagnosed with an illness like fibromyalgia, find enough support and understanding.

Swati Agrawal is a lawyer working with an organisation in the field of inclusion and diversity. She has been diagnosed with fibromyalgia, and works towards raising awareness about invisible illnesses and fight against the stigma.