Fibromyalgia is a controversial illness. There’s the lingering question, Is Fibromyalgia Real? Sounds like a harmless question that would invoke finding an answer, but sadly that is not the case. The endless debate affects real fibromyalgia sufferers, and leads to sufferers questioning themselves. This, in turn, results in isolation and depression further damaging the individual. What can we do? What resources do we have for ourselves? Kooki from blah wonders, Can we find closure in the WorldWide Web?
First of all, let me give special thanks to all the amazing and supportive people out there who make the world a better place for ill people. There are uncountable ways that someone can show support and positively change someone else’s life. To me, understanding is what changes mine. If there was one thing that still sheds tears on my cheek every time, it is understanding.
When I feel understood, I feel like crying out of happiness and when I am not, I just feel like crying. Probably because it makes me feel miserable and weak. I could go all the way about how others’ lack of understanding and support hurts me (by others I mean the closest people to me), but that wouldn’t change a bit of how I feel.
So let me talk to you about the people who actually care and understand because, yes, they exist. They ask about me, encourage me, send me hopes and wishes and give me invaluable advice and comfort. The thing is – none of them know me in real life and most of them live thousand of miles away. I like to call them “The Angels of the World Wide Web”.
When someone I barely know takes the time to write me a nice and supportive message while I could be sick for days and no one of my surroundings would even dare to call since “I am always sick”, I must think that the internet is kind of becoming my “Chosen family”.
I am only at the early beginnings of learning how to live with fibromyalgia, and while I hate to admit that I am desperately in need for help, I chose to hide my condition to my beloved ones and therefore, hide from them so they don’t realize how my life had changed. Why? because I am tired of being told that: I am too young for that; I may just suffer from depression; I should go out more; Move more; Live more.
No one is actually taking the time to open a google tab and search for fibromyalgia cause it is better to just think that something else might be going wrong with me, in my head (of course) otherwise I wouldn’t look fabulous.
Even though I do realize the “misunderstanding” that my life has became, I can’t help but blame myself and even start to doubt in it. I start thinking just like them and by doing that, I definitely disrespect my body AND mind. It is only when I open my browser and start reading my favorite blogs and Pinterest posts that I come back to life.
I breathe.
I realize that I am not one to blame and that there are people out there who not only accept their condition, but also work their a$$es off to become the best versions of themselves. The moment I heard of Fibromyalgia in my doctor’s office and started looking for it on the internet, I found the most amazing people I ever knew existed. They are smart, courageous, inspiring and mostly hilarious. And most of all, they are here for me. At first I was glad to know they exist and by the time I started participating and sharing, I was glad to see that even though they had the best reasons in the world to be uncommunicative and selfish, they are generous and incredibly open-minded.
The moment I heard of Fibromyalgia in my doctor’s office and started looking for it on the internet, I found the most amazing people I ever knew existed.
Not more than two days ago, I woke up feeling very anxious and discouraged, and even though I had just started a blog of my own where I share my little story, I was willing to quit and embrace the reality that nothing I do seems to be good enough. This same day, I received an email from one of the bloggers I appreciate the most who, despite being a full-time mom and a creative blogger among other things, found the time to check my blog and send me the greatest piece of advice and critic ever. Thank you, Brandi!
No need to tell you that this email made me feel way better than anything else in the last three months, so here comes the big question: Will I be able to get all the moral support and understanding I need from the internet? You tell me.
One thing for sure is that being able to bond with people beyond my circle has definitely helped me feel less lonely and frustrated and kept my laughing level pretty high. On the other hand, I hope that one day, my family and I will find the courage to accept my sickness – together – and in the meanwhile, I will keep growing the family I just discovered along with my sickness and do my best to be worthwhile of it.
From Kooki:
“I’m twenty six years old, married to a wonderful geek for four years now, fighting to make the world a better place 🙂 I have a Bachelor degree in business administration but I decided to give writing a real shot and I’m currently writing my first fiction book. I have been diagnosed with fibromyalgia a year ago, and I decided to start a blog (which is more like a diary) to talk about my experience with fibro and how it affects me so I can learn to accept it and live with it.”
To read more from Kooki, visit her at I’m Okay: Living with Fibromyalgia
Tweet with her on Twitter @kooki_honor
Pin her images on Pinterest at Kooki Honor
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