If I could talk to my one-week earlier self who was desperately trying to get support and understanding from her loved ones, I would say one thing: STOP. I might even hang a big sign over my head with “don’t try this at home” and by this I mean: talk about my recently diagnosed invisible illness.
Almost every single tentative I made to try to explain fibromyalgia or more commonly called « fibro-what? », ended up badly and the worst reaction so far was definitely indifference. I desperately tried to explain my condition to my mom. After all she is my mom and she needs to know what is going wrong with me ! actually that is wrong, she doesn’t. She doesn’t want to hear about how bad I feel or even taking into consideration that her baby girl has a chronic disease, that can’t be. This whole chronic condition and all these unbearable yet, still not-so-serious symptoms, sounded to my mom like childish complaints that can be handled with a serious frown and a: « don’t be silly, you’re going to be ok ». What am I supposed to respond to that?
The thing is, I understand her reaction. She has really been through a lot and she just can’t deal with it anymore. She doesn’t want to hear the words ‘sickness’ or ‘pain’ anymore. STOP! That isn’t the reaction of someone who doesn’t care enough to ask, but more of someone who is too afraid to ask ! and I’d rather keep my feelings and complaints to myself, than hurt the most brave person I ever known, who honestly needs a break.
My mother was not the only person I tried to talk to. My best friend as well just hit me with a ‘stop’ sign right on the face as soon as I started talking about my condition. This one was harsh, really hard to deal with. I was just sitting there, taking my courage with both hands and trying to talk about how I felt and how this diagnosis was turning my life upside down, while she preferred to use denial and indifference as a reaction. It actually took me much more than courage to talk about this « bad news » cause I only talk about things I can accept and how I currently feel, is definitely not one of them. Yet I thought that talking to my best friend about my condition would be the easiest part !
What happened? do I seriously sound so bad? What on earth could let a person I really appreciated and admired act so careless? I thought about the question for a few minutes (in reality, hours) while I felt that my blood was doing a one-way trip through my veins. It literally felt like a giant slap on my face and that situation just made my symptoms blow up in a beautiful firework of pain.
I guess some people just don’t like to hear bad things. They hate to be part of a bad scheme. My mother, my best friend, many else I thought I could rely on one day, just doesn’t want to be part of it. Maybe if I just stop talking about it and try to share it, then this shitty condition would disappear! Poof! no more sickness, no more symptoms, nor more drama! Why havent I thought about it earlier! Maybe I am the one who should feel guilty. I just come and spill these bad news without warning! So if I were to put myself in their position and look at a person who seems to handle and suffer from invisible symptoms; I would probably find it unpleasant and kind of shallow.
Then it hit me! My best friend just reacted like my Mom! (of course I have been thinking it over and over again since then) and the only thing she might get a chance to have in common with my Mom is the fact that she loves me. Not getting that would probably make me the selfish one, cause I might not like the way things work or how people show their love to me but if I want to find « understanding » I might as well start with myself and understand their worries.
Let me admit, just for this time, that it makes me truly angry, disappointed, frustrated and well, sad. But I know how it is to live with a burden and I don’t want to be anyone’s burden and definitely not another reason to worry. In fact, if I decided not to talk about my condition with my nearest and dearest ones anymore, it is not because I can’t find the right words to tell them but because whatever the words, living with a chronic-invisible-illness is still an ugly truth.
However I thank God every day for having a wonderful husband who turns into an invisible ninja everyday to help me fight this. He is probably the reason why I can breathe everyday and not drown in all of this. I might not be able to tell the ones I love about my condition, I probably wouldn’t have been able to do it without him; the love of my life.
In other words, I believe no one should do it alone or ever have to do it alone because there will always be a person somewhere who cares about you or at least goes through the same hell you are going through. So never Stop ! (in the name of love).
Kooki.
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