Pain is an old enemy, and a new friend. I write today to talk about my journey of coming to terms with my health conditions – Fibromyalgia Syndrome, and Bipolar Affective Disorder Type 2. I have learnt to accept that I live with these two disorders, and that I can still live a meaningful life in spite of them.
“Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues.” (Source)
“Bipolar Disorder is a mental health disorder that causes “unusual shifts in mood, energy, and ability to function”. You go through high and lows that are marked by depression and hypomania in Type 2. (Source)
When I was diagnosed with Fibromyalgia in around 2012-13, my life was turned upside down. I acutely remember sitting alone in the doctor’s office after a very painful test in which electric signals were sent through my body. I was in Mumbai as I worked there while my family was in Delhi. The doctor told me that I have Fibromyalgia and sent me home. He did not explain the diagnosis to me. He did not suggest any “treatment” or management methods. When I asked him about it, he told me to just “Google” it!
I remember the cocktail of emotions that went through me after the diagnosis. The first one was denial – “This happens to others, doesn’t it? How can it happen to me?” I went through severe grief, anger at the injustice of it, and finally, depression. I was angry that this has happened to me. It seemed unfair. What had I done to deserve this?
I went through severe depression where I would hardly get out of my bed. It was during this phase that I got diagnosed with Bipolar Disorder II. I went through another cycle of disbelief, anger and grief. It is not easy to believe that you have a chronic pain disorder and a mental health disorder. It involves putting your best laid plans to rest and accommodating your disorder in your life. No one wants to rearrange to their lives. They want their lives to go on as “normal”. I found myself constantly doubting my diagnosis during the good days when everything seemed fine. It was daunting to think that there are lifelong non-treatable disorders that I now have to manage every day.
My life changed drastically. I used to be a very active person, always going out for different things, whether it’s movie, shopping, dinner, plays or clubbing. After my illness, I was initially confined to the house. I also had to quit my job. I also ended up breaking up with my long term boyfriend around the same time. Suddenly, life as I knew it was gone.
However, I have come to realize that there is a meaningful life beyond the illness, and we can get to it through acceptance. You can learn to manage Fibromyalgia and any chronic disorder. It is first, important to accept that it is chronic and lifelong. Next, I learnt to manage and minimize the pain and fatigue. Most importantly, I learnt to find the good parts within the tough life. The aim is to live a meaningful life with chronic illness.
My journey of acceptance started with counseling, medication, regular walking, meditation and pursuing my hobbies. In around 2016, I was diagnosed with Bipolar Disorder. That’s when I started going for counseling. I also got my present job working with a wonderful NGO, IDIA Charitable Trust that gives me much needed flexibility in working. I wish there were more work spaces like that. I was lucky.
In my counseling sessions, we started by setting up small goals such as working for 4 hours daily and going for a walk daily. Slowly, we kept on increasing the target set in the goals. Small, manageable target setting is an important step towards recovery. These days my goals include that I will go for walk every alternate day and I will write 200 words daily. You can set your own goals such as cooking, reading, calling a friend at convenient intervals.
I had mentioned earlier that it is important to find things that you love within your current life. I can no longer go out all the time. There are good things within a more peaceful life such as my cats, writing, family, good food etc. We can make our own lives beyond our illness.
It’s not easy. For me, the toughest symptoms are fatigue and brain fog along with pain in legs due to restless legs. It’s really difficult to get out of the bed in the morning and convince myself to go ahead with my day. Your identity starts revolving around your illness. I often feel “lesser” than “normal” people. I feel guilty that I am not living up to my potential. Self-guilt, self-doubt, anxiety and other such emotions are part and parcel of my illness. Instead of fighting them to go away, I just let them stay. I try not to let them affect my goals. That’s how I have learnt to cope with the emotional baggage of my illness.
I can confidently say that I have found meaning in my life. I have a job, family, two cats and some hobbies. I can’t always function like I used to, but there is solace in a more peaceful life. Moreover, I understand myself, my mind and my body better. I am also more empathetic and understanding towards others. I have grown as an individual and discovered that I am very resilient. I can take on tough challenges in life and come out stronger. I feel proud of myself. When I hear and read about the stories of other pain warriors, I feel amazed at their strength and resilience, and feel a sense of pride for us. Pain is a friend now. An annoying one, but nevertheless, a part and parcel of my life here.
We are WARRIORS. We are our own superheroes. We are the spoonies!