Testimony of a Fibromyalgia Patient on Importance of Mental Health Care by Swati Agrawal
an informative and helpful account of battle with fibromyalgia
I am Swati, and I have Fibromyalgia — a chronic health condition that is marked by widespread pain, fatigue, sleep disorders, Irritable Bowel Syndrome, and many other debilitating symptoms. A large part of my daily life involves managing my health, and ensuring that I have enough energy to go through the day without aggravating my pain. There are many other Fibromyalgia Warriors like me who struggle everyday to find a way to live a good, meaningful life. Our struggles are compounded by lack of awareness and understanding about Fibromyalgia, not just among general public but among medical professionals as well. This is the reason that many patients don’t get diagnosed for a long time, if they do get diagnosed at all. We all struggle and suffer without much support.
For me, my symptoms manifested when I was working as a corporate lawyer in Mumbai. I started experiencing them when living in a highly stressful work environment with punishing long hours. That, along with feelings of disenchantment, loneliness and disconnection that are unique to modern life in big cities lead to my health crashing completely. I had extreme body pain, sleep disturbances, fatigue, cognitive difficulties and a host of other problems. Close to when I just completely crashed, I got a diagnosis from one of the several doctors I visited — Fibromyalgia. It was a life changing moment for me.
It has been largely agreed that Fibromyalgia is triggered by stress — from actual physical trauma to general stress (like mine). Muscular pain, fatigue, and even things like digestive problems can start from stress. Even if it is not triggered by stress, most patients face alleviation of their Fibromyalgia symptoms during stressful times. This indicates importance of giving mental health care to Fibromyalgia patients.
A lot of the symptoms of Fibromyalgia intersect with psychosomatic symptoms from various mental health disorders — ranging from pain, headaches, nausea, to sleep disturbances. Depression is medically recognised as a symptom of Fibromyalgia, and anxiety is a part of the package deal. Does that mean Fibromyalgia is psychosomatic or a mental health problem? Medically, Fibromyalgia has been categorized as a central nervous system disorder, labeled as a chronic neurological disorder. But, there seems to be a strong correlation between Fibromyalgia and mental health. Social marginalization, being victimized or abused, stress, physical trauma, growing up to learn to care for others at cost of your needs, and many other mental and physical body experiences combine as pain that manifests itself through these various symptoms. They affect our pain receptors and nervous system. That’s why the delineation between physical and mental is impossible.
It is also unnecessary and harmful as far as Fibromyalgia is concerned. It’s unnecessary because a lot of opposition towards associating Fibromyalgia with mental health disorders is because we don’t recognise mental health disorder as “real” illnesses. Fibromyalgia community wouldn’t be too keen on adding a mental health stamp when already facing lack of understanding. We are constantly told that our pain is in our head. We are told to not be lazy, and to just get up and work. If we cross over the bridge and understand that something being in our head doesn’t make it less real, it would be easier to foster a better understanding of co-relation between mental health and Fibromyalgia.
I also mentioned that lack of connection between Fibromyalgia and mental health is harmful. That’s because it comes in the way of providing effective treatment. A neurologist/rheumatologist/physician who doesn’t understand the mental health aspects of Fibromyalgia would end up dismissing the patient, over-medicating etc. Cognitive behavior therapy (CBT) has proved to be very effective methods for treating Fibromyalgia. Some anti-depressants are also prescribed for managing Fibromyalgia symptoms (again due to them being psychosomatic). I have personally benefitted a lot from medical treatment combining psycho-therapy with prescription medicines.
This doesn’t mean that Fibromyalgia is only about mental health. In fact, even mental health disorders are never just about mental health, are they? Fibromyalgia management needs regular exercise, good diet, good sleep, and lifestyle changes. Managing mental health is one of the most important parts of Fibromyalgia, but it’s not the only one. We need to end the false dichotomy between mental and physical so that we could give holistic treatment for Fibromyalgia patients. This is equally true for many other disorders.
Another important reason that we take mental health seriously for patients with Fibromyalgia is that getting and being diagnosed with Fibromyalgia (or any other chronic illness for that matter) has a huge fall out emotionally for the patients. When I was diagnosed with Fibromyalgia, I was devastated and felt that my whole world crashed. My whole life changed in a second as I had to quit my job, wind up my apartment in Mumbai, and shift back with my parents for the first time since I was 17. I had just come to know that I have a debilitating chronic illness with no cure. I had no medical help as no doctor listened to my problems. I had no-one who could help or guide me. It seemed that my life had no hope as I could not hope to build a life with the health problem I was facing. I slipped into depression, and wouldn’t get out of my room or house except occasionally. I was completely isolated, scared and angry. Thankfully, I eventually got help of a counselor. It took me over two-three years to just find my feet back.
I hope that patients-to-come won’t have the struggles that I, and countless others with Fibromyalgia, faced and continue to face. Managing mental health in conjunction with physical health of Fibromyalgia patients is the first step towards giving them effective holistic care. It needs to start with fighting the stigma, and with more research into understanding this complicated disorder. With that, I hope for better medical treatments for Fibromyalgia patients.
Swati Agrawal is a lawyer working for inclusion and diversity, who has been diagnosed with Bipolar Disorder and Fibromyalgia. She wants to raise awareness about invisible illnesses to fight against stigma faced by those like her.
