I started this blog a couple years ago to share my experience, a twenty-eight years old who is trying to cope with the fact that she has to live with an invisible sickness for, probably, the rest of her life. After years of wondering if I was sick or if it was just my mind tricking me into thinking so, I have (finally) been diagnosed with Fibromyalgia. An invisible and sometimes even debilitating, chronic illness I had never heard about that answered to the questions I have been asking for so long. Do I have a health problem? Is it all in my head ? and how long will it last?
Well, in case you don’t know what chronic illness means, it means it’s not going away, ever, unless a major medical improvement says otherwise. And invisible, well you already know what it means. And to me, that is the hardest part.
After my diagnosis, I got into the process you go through when you lose something or someone you can’t replace and you know there is nothing you can do about it. I know it sounds a lot like the grieving process, and the more I think about it, the more I realize that it might be exactly what I am going through.
Isn’t it grieving, to try to adjust to a new, uncontrollable and terrifying situation that takes every ounce of rebellion you ever had ? In my opinion, you grieve when you know there is no way out and that all you can do is accept.
Acceptance is not easy. It never was. Sometimes, I wonder if I’m on the right path, the one that will lead me to it. This path I’m walking on, is scattered with pain, incomprehension and solitude. The more I think that I’m getting closer to the light at the end of the tunnel, the more I realize that it might just be a train coming my way (thanks Metallica for putting this metaphor in my head).
I need clarity, I need understanding, I need CLOSURE. And this the « Why » behind this blog.
By sharing my experience with strangers, I started to understand that I was not alone and that it was exactly what would keep me sane. Every time I tried to explain my condition to the people who cared enough to ask, it didn’t go so well. It only made it harder for me to accept it and learn to deal with it.
To be even more honest, I also started to share my personal experience to exorcise my pain and frustration towards their judgement. Therefore, I secretly hope that they will not recognize themselves if they ever put their hand on this blog.
I say what I need to say in writing and this is the therapy I chose to try and feel better. The outside world is my biggest chance and also my scariest enemy and my new life partner seems more like a burden than of any help.
This sickness is affecting me everyday in ways I could have never imagined and it is probably going to last longer than expected. It is literally changing Me as well as every single part of my poor little existence.
Having an invisible illness (in this case, Fibromyalgia) makes you constantly feel like an imposter. An imposter to people who think you look good when in fact you are sick, and an imposter to those who are sick and think you look too good. In other words, I am quite never what I seem, and in different circumstances, it would have been enjoyable.
I am an imposter because I spent years pretending to be normal while suffering in secret. Why ? because I was afraid of rejection and judgment.
Only fear makes you think that running away and hiding is a good idea ! Well, let me tell you one thing, IT IS NOT (not always).
Every time I hide my pain. Every time I pretend to be okay and force myself into acting normal, not only I hurt my body but I also make it harder for people to believe me. To believe that my sickness is a real one, even though it is invisible.
I dont want to do that anymore. I can’t play pretend anymore, and I certainly can’t ignore that it is also my fight.
A couple years ago, the « Who » behind this blog was just me, a (grown) woman who didn’t understand her body, nor her mind. Who was looking for support as well as understanding. Now, I realize that because I started this blog, I have been able to meet to most supportive and caring community I had ever been part of. I’m talking about you Spoonies and Chronic illness fighters and therefore, the « Who » is growing bigger and bigger everyday.
There are literally thousands, and overall, millions of people from everywhere who share the same thoughts, fears and struggles. And thanks to them – and to the internet obviously – I realized that I am definitely not the only one suffering in silence and that no one should ever have to fight this alone, only because it is hard to explain and therefore to understand.
The people I’ve met thanks to this blog – the ones I run to when I need support – need me to fight along with them so we can finally end the stigma surrounding our condition.
Every time I share my experience, I know I might be sharing someone else’s too if not many, and it is more helpful than I could have ever expected. It might be the closest I ever got to closure. The more we speak up and share our experiences, the sooner we will be heard and maybe one day, treated.
My sickness made me question myself more than once, (probably where the imposter feeling comes from) and at this point, all I can say is that sick and tired are definitely part of who I am. However, I also learned that I am not weak, nor crazy. I am not faking it, not lazy. And NO, this sickness, however invisible it is to others, is definitely not in my head.
My sickness is called Fibromyalgia. A chronic illness that makes it harder for me to do simple. To do all those daily tasks that sum up to « life ». And the fact that many people still believe otherwise just because I don’t look sick enough to them, is definitely the new « Why » behind this blog and the story it tells.