Having no brain left makes you so vulnerable. Having to suffer and endure things just to finally understand them, instead of being able to foresee them, is absolute hell. Having zero ability to reflect is genuinely the worst feeling. I only realize things way too late, zero ability to anticipate, completely lost. Doing things even when you know they're going to destroy you, but doing them anyway... seriously, having zero control over anything. I'm just enduring everything, wowwwwww. Why is it that when things are bad, everything has to get twice as bad lol?

Take care

​

On a personal note, I realized I couldn't trust anyone. In the end, I just tell myself I have to protect myself as much as possible and isolate as much as possible... If I could leave, I would, but I can't expect anything from the ones who caused my problems in the first place. I wish my room was my safe place, but right now it's just a mess, when it should really be my bubble, my cozy space.

Si vous êtes victime de violences sexuelles (agression, viol, etc.), n'oubliez surtout pas cette association :

Viols Femmes Informations (CFC) : 0 800 05 95 95

(Gratuit et anonyme, du lundi au vendredi de 10h à 19h)

Personnellement, je les ai contactées pour moi. Elles sont tellement gentilles, à l'écoute, pro et de très bon conseil. Elles peuvent même vous aider à financer le transport si vous devez vous rendre dans un palais de justice !

Si vous avez été victime, parlez-en tout de suite à des personnes de confiance ou à des associations. Plus le temps passe, pire c'est.

Ne protégez jamais la personne qui vous a fait ça. Si vous êtes amenée à croiser votre agresseur souvent, il faut absolument vous protéger (de mon côté, je compte demander une mesure d'éloignement).

Parlez-en le plus vite possible aux bonnes personnes. C'est hyper important pour vous, mais aussi pour les autres femmes.

Rendons-nous justice ⚖️.

​

With illness, I’ve realized that the most important thing is learning to protect yourself.

Cutting yourself off from others, staying in your own bubble, and preserving yourself from everything else. Not seeing mistakes as a dead end, but as a learning process. Taking both the good and the bad.

Either way, I think life is somewhat predestined. There’s no point in forcing things or fighting against fate. This illness forces me to relearn everything from scratch.

Right now, my priority is to protect myself, even if it means accepting too much just to keep my peace.

Sending you all a lot of strength.

TL;DR: Severe ME/CFS, post-exertional malaise, sensory overload, lack of medical/social recognition, isolation, loss of safety, gaslighting, pacing struggles, severe emotional and physical exhaustion.

Honestly, I don't even know if we're going to make it. I’m trying to hold onto hope, but it’s so hard. I think we have to be extremely careful with the people around us. It’s a delicate balance between asking for help when needed and being very cautious, because people just don't understand how much we suffer or how deeply vulnerable we are.

On my end, I try to keep hoping. I tell myself that even if I never recover, my life will still have had meaning—but I’m just so exhausted. I'm tired of fighting for months to move forward, to learn, only for people to cause harm and make me feel unsafe.

I still think we have to try to hold onto hope, accept things as they are, and learn from our mistakes. But the most important thing is protecting ourselves from others: limiting interactions, remaining polite, and just doing what we need to do on our own.

It’s just so hard. This illness is overwhelming, and people understand nothing. They disregard our health and respect nothing. How do you keep the strength to go on? How do you keep from breaking down when you're in so much pain, yet nobody sees it, feels it, or takes it seriously?

I’ve reached a point where I even doubt myself. I don't even know what's real anymore because we get gaslit and ignored so much. It is a truly terrible illness. Nobody believes us, nobody takes us seriously, and nobody sees how bad it really is. I am completely destroyed—psychologically, physically, and my self-esteem is entirely shattered.

How are we supposed to mentally survive this? We are pushed into such an extreme state of fragility where the slightest thing upsets us and stops us from sleeping, forcing us to wait until the next day just to try to rest. I can't rest, I can't calm down, I can't pace, I can't do anything. It's completely insane. I have zero help, zero recognition. People act like I’m making it up, but they have no idea what this level of suffering is actually like. It’s horrifying. Why can’t people just believe us, help us, or at the very least leave us in peace?

​

I just wanted to say that I’m going through a really difficult time right now. I’m trying my best to accept things and move forward, but I genuinely advise all of you to be extremely careful about what you say and who you talk to.

Be really mindful of who you place your trust in and who you ask for help. It can easily backfire on you, especially when you're in a very vulnerable position—I'm in a severe state myself. People out there respect nothing, neither consent nor health. I don't feel safe at home, or anywhere really.

I don't know if there's any hope of getting through this, but honestly, it feels like the best thing to do is to lay low, try to stay out of sight, and maybe suffer in silence rather than letting people back into your life whose stupid decisions will only end up hurting you even more. I know you are the only people who can truly understand me, and that's why this community means so much to me.

If I ever make it through this, I will do everything I can to help our community. I really hope so, because you're the only ones who understand, and I know how deeply vulnerable you all are as well. I’m sending you a lot of strength for what you're going through, and I’m praying for you.

Given how bad I feel after wearing myself out looking for solutions to my problems, just to get immediate satisfaction, I'd say I'd rather just rest and to hell with the problems.

​

For the past few days, I’ve been trying to reduce mental overstimulation as much as possible—things like phone time, screens, arguments, over-talking, and so on. And honestly, I feel so much better. It has genuinely improved my daily life, and I feel like I'm sleeping better now.

I already knew deep down that my phone was toxic for me, but right now, I don't really have anything to replace it with. It was actually after taking a major crash that I realized I truly needed to avoid these triggers.

Of course, it’s not about completely banning everything, but rather finding ways to replace whatever overstimulates your mind or demands too much heavy thinking—and screens are definitely part of that list.

Sending you all so much strength, courage, and positive energy!

​

Hi everyone,

I'm looking for advice. When I can't empty my bladder even though it feels full, it's really hard to find a position to rest or sleep.

Regarding positions:

Sitting works best for me.

Semi-reclined (between sitting and lying down) helps a bit too.

Having my upper body higher than the lower part of my body makes me feel better.

Sometimes, putting a pillow under my pelvis helps as well.

Side sleeping isn't great, but it's still better than lying flat on my stomach or back.

How do you manage to rest or sleep in this situation? What positions or pillow setups help you when your bladder is full?

Thanks in advance for your help!

​

Hi everyone,

I'm looking for advice. When I can't empty my bladder even though it feels full, it's really hard to find a position to rest or sleep.

Regarding positions:

Sitting works best for me.

Semi-reclined (between sitting and lying down) helps a bit too.

Having my upper body higher than the lower part of my body makes me feel better.

Sometimes, putting a pillow under my pelvis helps as well.

Side sleeping isn't great, but it's still better than lying flat on my stomach or back.

How do you manage to rest or sleep in this situation? What positions or pillow setups help you when your bladder is full?

Thanks in advance for your help!

I want to leave home, even though I’m in a severe state; there is someone there I can’t stand. His presence makes me feel awful—it’s terrible. Every time he’s around, I relapse. I tell myself to stay strong, gather my energy, avoid feeling intense emotions, and just wait until I can leave...

Bonjour...

L'année dernière, un ami de mon père m'a agressée sexuellement. J'ai une maladie chronique neurologique et immunitaire sévère , donc la maladie m'a rendue extrêmement vulnérable. Je suis très fatiguée, souvent confuse, et complètement dépendante des autres au quotidien. Cet homme en a profité. J'étais tellement pétrifiée et épuisée que je n'ai pas pu faire de conflit, j'ai juste fui.

​Depuis, cet homme revient régulièrement chez nous. À chaque fois, c'est un enfer : ça me provoque des crises de panique, de la rage, et ça détruit le peu de santé qu'il me reste.

​Aujourd'hui, mon père l'a encore ramené à la maison. Quand j'ai eu une confrontation avec mon père pour lui dire que c me brisait et que j'allais appeler la police, il m'a insultée de « malade mentale », m'a dit que c'était son ami et qu'il l'aimait bien, et il a même menacé de ne plus m'apporter de repas.

​Là je suis dans ma chambre, sous le choc émotionnel total. Je ne fais que pleurer jusqu'à l'épuisement, j'ai envie de tout casser, j'étouffe sous me stress et mon corps est en alerte permanente. Je n'arrive même plus à penser. Je n'ai même pas la force physique de déménager ou de partir sans me mettre gravement en danger au niveau de ma santé. Je vais peut-être devoir aller chez mon demi-frère mais rien que le trajet va me ruiner la santé.

​Je ne sais plus quoi faire, je suis au bout de mes forces. Merci d'avance à ceux qui me liront ou me soutiendront.

​

tldr : Living with a glitching brain is hell: you lose all logic in the moment, repeat the exact same mistake 50 times without even realizing it, and people get mad at you for it. The second you try to force things (overstimulation, pressure from others, physical discomfort, or popping stuff to force sleep), it ends in a crash and pure night panic. Your brain freaks out, tries to hyper-control everything, and anxiety completely warps your personality. The only way to bring the stress down is to stop enduring it all: accept being angry, accept making mistakes, say no to people, and just choose your own peace.

_

TL;DR 2: Honestly, to keep my mind from spiraling and stop stress from taking over, I realized that absolute silence and screens are my worst enemies. My two best tricks that actually work: keeping a bit of background noise on (like white noise) to give my brain something to anchor on, and replacing screen time with simple hands-on activities (crochet, painting, scoubidou, friendship bracelets). No pressure, no rigid goals—just taking it easy and bringing the tension down day by day!

. _

First off, sending so much strength and good vibes to everyone, I really hope you’re holding up.

In this post, I just wanted to get a few things off my chest: stress and what triggers it, what goes on when our brain stops working properly because of illness, the trap of hyper-control, and how anxiety can literally turn you into a completely different person.

It is so hard living with a brain that just doesn't work right. People really don't realize what it’s actually like: finding yourself with zero perspective, zero critical thinking whatsoever in the moment. It’s so frustrating to realize after the fact that you’ve repeated the exact same mistake 50 times without even catching it at the time. Having an illness that directly hits your brain is brutally unfair. You don't always control what you do or say, and because the people around you don't get it, you end up on the receiving end of harsh reactions. You need insane mental strength just to take all of that in. We learn the hard way, but having those lightbulb moments is almost impossible when your brain itself refuses to admit that it's currently glitching.

The real root problem behind all of this is stress. When you live with a chronic illness, you’re already putting up with so much daily stuff that you feel like you have zero control over anything. But the huge spike in stress hits the exact second you force yourself to do things you really don't have the energy or desire to do.

I constantly swing between two phases: the phases where I force it to pretend everything is fine (which ends up being a total disaster because I’m completely spent), and the phases where I cut myself some slack, where I just let things flow, and honestly I feel a million times better that way. The problem is that afterwards, everything around me comes crashing back in to stress me out: the environment, the lack of support, the pressure... It all piles up and pushes us into making irrational choices.

Between overstimulation that pushes us past our limits without us noticing, other people’s demands dumping their own anxiety onto us, physical discomfort when you're exhausted, or the trap of taking things to force sleep when your body isn't ready... All of that just ruins our nights and creates real trauma around sleep.

That’s right where the control trap snaps shut. Instead of accepting where things are at, the brain goes into full panic mode. I can't accept my mistakes, I can't accept being stuck, so I start micromanaging my every move, trying to fix everything this second, and obsessing over completely absurd details.

There’s also all this toxic self-talk, how we speak to ourselves with "I musts," "I shoulds," and all these rigid rules we lock ourselves into. We absorb society’s pressure without even meaning to: fear of the future, trying to fit into the mold... When in reality, as sick people, we just have a vital need for calm, safety, and peace. Everyone around us is running on constant pressure, and if we try to keep up, we lose our minds. Honestly, sometimes you just want to opt out of the system entirely so people leave you alone.

Our own thoughts make everything way more complicated, when we really should just drop the pressure, go with the flow, and enjoy whatever small moments of rest we can get. If we lived in a calm world, we’d be so much calmer.

Even personality-wise, I feel like I turn into someone else entirely at times. When I’m trapped in those phases of panic and hyper-control, I don't even recognize myself. And then, the moment the pressure drops and I let go, I realize that everything driving me crazy during the freak-out wasn't even true.

It’s up to me to stand up for myself and stop treating myself so harshly. I have the right to feel down, to have negative emotions, to be angry, to make mistakes, to be myself, and to draw my line in the sand. The stress is only going to drop when I can finally choose what I want or don't want to do. As long as I just passively endure everything, I’m going to stay stressed out. So from now on, if I don't have the strength to do something or reply to someone, I just won't do it, period. I’m finally giving myself permission to breathe.

_

I completely forgot to mention something super important: the little things that actually help me let go and stop getting consumed by stress or obsessive, controlling thoughts that loop in my head.

First off, I live in a super quiet place—a tiny village where it’s silent and nothing really moves around. Honestly, that total silence is insanely stressful for me. So, my trick is to always have background noise going. Whether it's a white noise machine or just playing something in the background on my phone, it gives my mind something to focus on and keeps my thoughts from spiraling out of control.

Then, the big one: screens. For me, they’re a huge source of stress and a massive trigger for relapses. The constant notifications, people reaching out, content that makes you angry or sad... you really don't need to add that kind of noise to your life. I'm not saying you have to completely ban them overnight, but rather replace them with better habits.

My long-term goal is to step away from screens and switch to calm, hands-on activities. Simple stuff like crochet, coloring, painting, drawing, or even making scoubidous and bracelets! Browsing online to find craft ideas can take too much mental effort sometimes, so if you have someone around, it’s great to ask them to help you look for stuff or grab supplies.

At the end of the day, we’re dealing with this condition for the long haul, so we have time. There’s no point in setting big goals because goals just create more stress. It’s all about taking the pressure off and finding nicer, calmer ways to pass the time.

Take care of yourselves, stay safe.

​

Hey everyone,

I'm writing this because I just realized something huge.

For a while, I was doing great—super relaxed, living by the mindset that life is short, societal rules don't matter, and I should just enjoy myself and do what I want. It felt amazing.

Then, stress crept back in without me even noticing. My home environment is extremely stressful, and my family's anxiety just rubbed off on me. My brain switched back into overthinking mode. I started trying to control everything again, questioning every move ("I should do this," "I must act like that"), and hyper-focusing on every little problem instead of just letting go. On top of that, I glued myself to screens, which only made things ten times worse.

It took me two whole weeks to realize the trap... and the more I stressed, the worse my physical health got. It’s terrible how much damage it caused.

Now I realize I can never forget to stay calm, relax, and just accept things, even when it's really hard. I’ve put up post-its everywhere and set reminders on my phone so I don't lose sight of what actually matters: stopping the endless overthinking and keeping my peace.

Sending you all lots of strength and love. Take care of yourselves!

​

Hi everyone,

I hope you're all doing well. If you're not doing well right now, I'm sending you so much strength and love.

I had a huge realization today, and I feel like it's a trap so many of us fall into.

For a really long time, I absorbed this toxic idea (probably from society, the internet, or how we're raised): the belief that we have to persevere and endure pain if it's supposed to help us in the end. I kept telling myself, "OK, this thing is hurting me, but it's the price to pay to get better, I just need to keep trying."

Honestly? It’s a complete illusion. I've suffered way too much because of this mindset. We keep trying the exact same thing 50,000 times even though it's destroying us, hoping for a different result, just because we’ve been taught that stepping away means being "weak."

I've decided that I'm completely done with that. My new rule with myself is super simple: If something is optional and it causes me harm, it’s an immediate STOP. No second chances, no negotiation, it’s NEXT.

I really want to unlearn this mindset we've been conditioned to accept.

Do you get what I mean? Do you have examples of this in your own life, and what are your thoughts on it?