the F is silent
let me set the scene…
It was the night of my 24th birthday, and we were celebrating. We were at the bar with a shot of tequila in the air cheering to any excuse to let go and dance the night away. We had the usual gang, our boys who were still talking about last weeks football, and the girls, feeling ourselves in our best sparkly little dresses, one was already chatting up the bartender and the other was defying the advances of someone else. On top of that we had two newbies… Friends of a friend, I didn’t know them, but they were sweet and both joined in the birthday cheers.
sadly my temper flipped just a few seconds later…
One of the two newbies then came up to me and handed me a drink. I’m not going to pretend that I remember what exactly lead to his foot being jammed in his throat and it is irrelevant to why I got angry. The anger that came up was already bottled up inside from my past. Which meant this wasn’t his fault. We had all been drinking and the music was loud, confusion and intoxication coloured the conversations around. So, let’s just say that he did not know anything about me before he said, “well it seems like you have a lovely and easy life.”
sometimes I do question my own psychological response to anger, because on the moment all I did was stay quiet, nod and smile when in actual fact, I was raging on the inside
In all honesty, I was hurt. So, I ended up yelling at him, walking away and simply getting on with my evening. My friend wasn’t surprised by my actions, knowing me, but she didn’t understand why I was offended by someone not seeing my illness.
I don’t think I even knew why I was so hurt in the moment…
so, I unpacked it…
I was born with an illness that is incurable, degenerative and painful, but none of this is visible to the naked eye. All of my dysfunctions are internal. Yet, the damage is extreme, especially over a lifetime of forcing our bodies to continue pretending to be normal. One of my most problematic areas is my lungs, they have been collapsing day by day, and recurring serious infections have eaten whole sections of my lungs over the years. Breathing capacity I never got back.
I don’t know how to explain how it feels to not be able to breathe in life, but the only thing I can compare it to is trying to breathe through a wet cloth
it is difficult
and it is frightening
What threatens me is within my body. It is simply not capable of functioning on its own, medicine helps, but it will never be independent or free. And all of this is invisible.
In a way, I felt like it was real only for me.
I once thought this was a blessing.
It meant that I could keep it away from my friends. Kids growing up didn’t know how to handle it and it either turned into something that was taboo or something I was bullied for. So, as a teen, I started to choose who I shared it with. And when I moved out the country at 18 I tried leaving it behind but the secrets just threatened my new friendships. It was pointless anyway because they always ended up finding it out in the end.
I thought it would free me to hide it, but the secrecy was just a different type of shackle
As an adult, I avoided bringing it into conversations because it changed how my friends acted around me. I saw partners turn into nurses and sign the death sentence of our relationship. I had friends who simply didn’t know what to say after I had told them, forcing both of us to sit in silence across french toast during brunch. The reaction I hated the most was when I saw pity in my friend’s eyes. I was proud of who I was despite my illness, being defined by it was my worst nightmare.
And losing my identity to CF after I admitted what I had, felt like the worse punishment possible.
What I realised hurt me now on my 24th birthday, was that I had erased, from my own history, the battle that had made me into the adult I was. I had removed it from my image and my identity. All this time, I thought I was hiding my biggest weakness, when in actual fact I was ignoring what had made me strong. Projecting a curated image of who I was had just been an extra safety blanket to help me feel normal growing up.
in a way it was only denial
So, yes, I had been lucky to not be defined by my illness at first glance, but it also made me feel very alone. Dividing my own life in these two separate worlds made me feel detached from myself. It’s also why I was such a terrible patient; I hated stepping foot in my CF nightmare, and often I lost control of my own emotions and rage when I was confronted by the realities of my illness. I had separated myself from it so much that I felt insulted to be categorised by mutation.
And that is how I unconsciously hid a massive part of myself from my own reality.
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12 thoughts on “The C(F)loak of Invisibility”
Yes CF is an an on going pain that is hard to control
Its painfull to see somone with CF and see that inside them there life is not easy at all.
Lots of hugs and love to all CF people in the world.
Thank you for your warmth and support. Best little brother in the world xx
La profondità delle situazioni che si affrontano rendono la grandezza che si è.
Keep the way
Merci Fanny de nous partager ce si beau texte… à travers lui je te retrouve dans ta très jeune adolescence à Amman. Tes colères et frustrations dont je ne savais pas toujours comment les approcher, tes posts sur FaceBook de défiance..
Que l’écriture t’offre de nouvelles perspectives… en tout cas, n’étant pas experte en anglais, je peux te dire que Kim est plus qu’élogieux.
Pour ma part je ne sais l’écrire mais suis très émue en te lisant.. et j’espère que ce texte soit partagé et repartagé.
Prends bien soin de toi. Je t’embrasse
Merci Françoise… Je doute que ma frustration avec ma vie a très peu changer, c’est peut-être plus juste de dire que en grandissant tu commences à le comprendre et contrôler. Peut-être même l’utiliser en bien. En tout cas, je l’espère.
Merci pour le soutien, j’espère y trouver ma liberté.
J’espère que tout va bien de votre coter du monde aussi xx
Les batailles dans lesquelles on s’engage, marquent et édifient notre personnalité. En général on aime à penser qu’on choisit nos batailles. Mais que faire de celles que le hasard nous impose, malgré nous? Des batailles qui durent toute la vie et que la plupart du temps on décide de mener dans l’ombre, pour protéger les autres plus que soi-même… Ce texte lève un voile sur les questions d’identité, de diversité et de relations interpersonnelles. Merci Fanny pour les émotions et réflexions que ce beau texte éveille en moi, en nous.
Chère Fanny, tu ne te souviens très probablement pas de moi personnellement, mais je t’ai connue même avant le diagnostic officiel de ta maladie, donc encore un petit bébé. Cela fait longtemps que je n’ai plus vu ta maman et vous tous, car nous vivions également toujours à l’étranger.
Depuis ce mois-ci nous sommes rentrés en Suisse définitivement et j’espère vous revoir un jour pour rattraper un peu toutes ses années. Tu salueras bien tes parents de ma part.
Via Instagram j’ai découvert ton compte et ton blog et je tiens à te dire que je t’admire beaucoup comment tu as su gérer ta vie et ta maladie: tu es devenue une très belle personne dans tous les sens du terme. Je ne peux que te souhaiter tout de bon pour le futur.
Bien amicalement, Marieke Lebet-Booij (la Chaux-de-Fonds)
Quel beau commentaire qui ramène à la lumière tant de souvenirs…merci! nos chemins se croiseront certainement encore dans ce grand et petit monde à la fois… à bientôt après cette rude pandémie au moins.
Regardless of if you have an invisible disability or health condition, can we all just acknowledge that a guy saying to a woman that “it seems like you have a lovely and easy life” is actually a pretty weird thing to say to? This sounds like one of those comments “nice guys” say about you being hot, then snap and show their true selves because you don’t want to fuck them
Honestly, it’s just shocking the audacity people have to comment on realities they know nothing about… and even worse to think how many things are just chalked up to small talk.