On the morning of May 25, 2019, I sat in my bed, waiting for the clock to strike 12 so I could hit that publish button and my blog could finally go live! This was going to be the first time I was going to tell the world the truth about my fibromyalgia diagnosis. To say it was nerve wrecking would be an understatement!
Most people didn’t know I’ve an illness due to its’ invisible nature. In fact, people have always assumed various things about my disappearances during flare-ups and I have never reached out to explain. People to this day think I lead a pretty normal life; unaware of how many adjustments I make on the daily. Life would be so much easier, I thought to myself, if I were to come clean with my truth and stop hiding behind closed doors. The confusion and/or problem though, was that I wasn’t sure if I was ready to face the consequences. I was scared. My personal Instagram is curated of picture perfect moments with the most Insta-worthy captions. And that’s really all I was comfortable with sharing – the best snippets of my life! This, however, would require me to be real. To be vulnerable. And more than anything, to be okay with sharing the parts of my life that weren’t so pretty!
At 16, I got into an accident that literally changed my life around. I was bedridden the entire summer, unable to sit, stand or walk. The slightest of movement was so painful, it made me want to scream. Yet, the strongest pain killers weren’t strong enough to take away my pain! Naturally, I started missing school deadlines and exams. To put things into a little more perspective, this was my last year in high school; full of mental, physical and emotional pain! After a couple years of constantly finding myself at the doctor’s, I was finally diagnosed with fibromyalgia.
Fibromyalgia, like most other chronic illnesses, is stigmatized. The reason being its’ lack of visible symptoms, as well as its’ diagnosis being based on an elimination process instead of a simple blood test. That’s why some people think that those with the illness have either invented it or that the problem is purely psychological – it’s “just in their heads!” Sadly, this stigma sometimes even comes from the very people that are supposed to be of help, including doctors and other healthcare providers. At times, even your own family will judge you! Bringing up your illness in a casual conversation with them can be viewed as “complaining,” “faking it,” or “being a drama queen” to get their attention! It’s like walking on egg shells because anything and everything you vocalize about your illness can be used to your disadvantage.
In South Asian communities, the stigma is further exacerbated because disclosure leads to rejection in the community and being considered “expired goods.” For this reason, I held onto my diagnosis tightly, as if it were a shameful secret. All the while dreading people’s perceptions of me if they were to ever find out. When I did mention it to a few close friends, it was always in the passing; briefly mentioned as though it wasn’t a topic important enough to actually have a conversation about!
Naturally, I ignored my fibromyalgia for as long as I could and pretended like it didn’t exist! I learnt to brush it under the rug, much like the rest of my family that were in denial about my diagnosis. In the process, I started blaming myself for things that had nothing to do with my capabilities as a person and everything to do with my diagnosis. My struggles in school to me meant I was no longer smart. As if becoming unintelligent was a real thing! I even started giving up on my dreams. All the while not realizing that what I actually needed was time to process this new life I was living and accept the shortcomings that come along with it. Sadly, I didn’t take my diagnosis seriously – until I was forced to!
One fine day during dance rehearsals, I pulled a back muscle. As usual I thought it was my fibromyalgia flaring up, so I ignored the pain and continued dancing. I didn’t even realize it was an inflammation until a few days later when I woke up with pain in a very specific area of my back. The doctor gave me some muscle relaxants and told me I’d be fine in a couple of weeks. A couple weeks go by, no improvement! A couple months go by, and no improvement! That’s when the frustration kicked in! Why isn’t my body healing? What’s going on? So many questions and no answers. Naturally, my physician started referring me to various specialists. Who knew an injury that was supposed to take a couple weeks to heal would actually put me in bed for almost a year and that I’d have to see 10 different doctors to figure out what on earth was going on in my body (and that number is not even an exaggeration)! I now realize that this entire process was my body’s way of telling me to take it seriously! It was a reminder that I can’t continue ignoring my body and dare I do, it’ll remind me time and time again that I’m in debt to it. It’s not the other way around!
Initially, I was worried talking about my fibromyalgia was too personal a thing. I wasn’t sure if people would be interested in reading about the difficulties and struggles of living with a chronic illness on a platform where most people come for feel good content! It also required me to open up about something I had been keeping to myself for twelve long years. Was I ready to share such intimate details of my life? I wasn’t sure if I even had the right words to describe my journey. In fact I had never written in my life so how would I even do it justice? Thousands of questions ran through my mind!
Going public with my fibromyalgia diagnosis was a very gradual process for me. I actually wasn’t convinced it was the right thing for me to do until my sister gave me the idea of starting an anonymous blog. Hmmmm … that sounds promising, I thought to myself! Once the seed was planted in my brain, I started putting in the time and effort it required, and after a few months of googling everything, there I was – ready to start my own blog! And I did so without revealing my identity to the world! Though I did mention to a few close friends and cousins that I was starting a blog, they had no idea what it was going to be about. It would be a “surprise,” I told them. Naturally, I was super anxious – it was the fear of the unknown. I wasn’t sure if they were going to be mad that I didn’t tell them any sooner, if things like my disappearances, constant pain, fatigue and sleep problems would finally start making sense to them or if they’d have countless other questions for me. I just didn’t know and that to me was very scary!
Soon, the support started rolling in. From family, close friends, friends of friends, and acquaintances – everyone had nothing but positive and encouraging things to say. Over time, I realized that after welcoming people on my health journey, people started welcoming me into theirs. And they seemed to have only reached out to me because I had opened up about my own struggles on social media!
To be honest, I was happily surprised with how everyone reacted once I shared my diagnosis. I realized the beauty and strength in being vulnerable. And most importantly, that I don’t have to go through this journey all alone. In fact, there’s an entire community out there that I can reach out to. And to my surprise, theirs was the kind of support I was yearning for! Though the entire process was emotionally overwhelming, the highlight for me had to be the fact that for the first time in twelve years, it felt like someone had lifted a huge weight off my shoulders. And to be honest, that is one of the best feelings ever! Especially, when you’ve been holding on to that something for so many years.
This roller coaster of an experience made me realize the need for unfiltered reality, more truth and honesty in today’s world. Being able to see more of ourselves in other people could help us relate and open up to each other, thus, stopping the vicious cycle of isolation most chronic illness warriors find themselves in. Since I don’t have an educational background that can treat people and my experiences are solely mine, I’m happy to be playing my little part in helping them deal with the emotional trauma that comes with living with a chronic illness. It gives me immense happiness to know that someone, somewhere in this world finds comfort in my words. And my face genuinely lights up when I receive comments from them telling me I couldn’t have done a better job describing their lives. Knowing that makes my heart content and puts my mind at ease.
They say great things come from being uncomfortable and they’re most certainly right! Looking back, I don’t regret a thing! In fact, I’m thrilled to have chosen this path. This journey has truly changed the way I perceive and handle my fibromyalgia, as well as how I view myself as a person, in the most beautiful way possible and I’m nothing but thankful for that!
Can you think back to a time when you took a similar leap of faith that brought so much joy and contentment into your life? Please share with me in the comments below!
Love and spoons,