Most people don’t realize the struggle, but that’s OK. Sometimes all they need to hear is that your stomach is acting up and they’ll understand without prying any deeper.
No offense to anyone, but sometimes you just don’t want to go out. We get it. If these excuses don’t work, here’s a foolproof fallback solution: “I have a club meeting and the first rule says I can’t talk about it.”
Feel like a little ranting and raving to get your point across? Tired of the same old “just breathe” or “you don’t look sick”? Submit your own CF rant here.
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I want to pre face this by saying I’m not suicidal before someone try’s to offer me the number for a hotline or whatever.
I’m at a point where I feel like I’m running out of options and I can’t keep going. I don’t shower one day to the next and I don’t sleep either.
Today I requested my GP start me on bridging HRT (testosterone) as I won’t be able to go to a NHS gender identity clinic for years because of how long the waiting lists are.
The problem is I worked myself up so much to ask that if now I don’t get the outcome I need I’m going to struggle. I already struggle everyday, in the past few months I’ve lost 15 lb because of my mood effecting my appetite. I’m loosing the ability to do things every day because of my lack of sleep and food as well as my already low mood. I’m really struggling and I can’t cope.
I’ll force myself to keep going because I have too but it’s getting harder each day and all I want is to just turn to dust and become a distant uncared about memory to my loved ones but that’s not possible. I feel trapped and I don’t know what to do.!
This is a vent post and I want to reiterate I am not suicidal. I have no intention of committing suicide but I am struggling and needed to vent my emotions right now.
I wanted to update. I’m still in this headspace and my doctor did hours of research and unfortunately the GMC updated their advice so unfortunately he can’t unless he gets the go ahead from a specialist now which I’ll have to pay for or wait longer for the clinic.
At the moment I’m working on saving to pay for my appointment because I need this.
I’m seeing people use the term “chronic fatigue” incorrectly all of a sudden lately. Granted, I’ve only seen it on Twitter, but I still want to talk about it here. If you’re using the term improperly, I’d like it if you’d stop and inform yourself on the subject.
Chronic fatigue is not just being very tired, in case you’re not aware. It disables you and comes with cognitive dysfunction (persistent state of confusion, inability to focus, inability to process new information or articulate your thoughts, poor memory, and more).
Chronic fatigue especially ISN’T being tired due to punctual external reasons that’d tire any person without a preexisting condition and it DOESN’T go away with proper rest. Proper rest simply avoids worsening it, and even that can fail, seeing as obtaining proper rest when you have chronic fatigue ranges from very difficult to Not Happening.
Not everyone’s chronic fatigue is equally disabling, some people can lead a “normal” life at a great cost (and risk of permanently making it worse) while others are bedridden, but it’s not a tiredness caused by a factor that if you remove it, will fix it, unless of course you find effective MEDICAL TREATMENT that makes it go away AS LONG AS YOU KEEP TO YOUR MEDICAL TREATMENT, or get a specific SURGERY in case yours comes from tethered (spinal) cord and/or CCI. This surgery consists on fusing some of the vertebrae of your neck permanently, by the way.
Some conditions that cause chronic fatigue; your brain being deprived of enough oxygenated blood (orthostatic intolerance, anemia, hypotension), your immune system attacking your own body (autoimmunity), metabolic issues on a CELLULAR level (ME/CFS), gastrointestinal issues, chronic pain, and a long, long etcetera. Mine comes from a combination of a genetic mutation that makes ALL my organs function poorly, orthostatic intolerance and autoimmunity.
It’s a disabling condition nearly impossible to combat and even more impossible to push through. I’ve been trying to treat mine for 3 years, researching and trying new things non-stop for 3 years, and I’m still housebound and unable to work.
Please, I beg you, don’t trivialize the term “chronic fatigue”. The medical establishment and society at large already don’t take it seriously, believe it can be cured by positive thinking/CBT or exercise, or believe it’s a myth to justify laziness.
Please, don’t turn “chronic fatigue” into the next “gaslighting” or “emotional labor”. The harm that’d cause to the disabled/chronically ill community would be unmeassurable. We deal with enough disbelief and lack of care as is.
Passing this along to help spread awareness, but I also have a question…
I know and understand that part of the difference has to do with the metaphorical cost of doing anything being significantly higher than what would be considered normal with causes that are either literally inexplicable or extremely obscure and is generally diagnosed based on level of severity and frequency, but how does one actually tell the difference?
An example for comparison: a person unknowingly dealing with burnout who literally can’t remember the last time the didn’t feel dead-on-their-feet tired. I realize that a basic maintenance checklist like “when’s the last time you drank water, ate, bathed, slept?” should be covered before jumping to conclusions, but what other things should people check before misappropriating a real and serious medical condition?
As someone with ADHD, I understand how difficult it can be working and living with people who don’t take an invisible condition seriously, and I know how some doctors are just in it for the money without any actual care regarding their patients, but how should one properly explain the difference with chronic fatigue? When explaining certain symptoms I have from ADHD, my usual example for comparison is urination; everybody normally does it, but 60 times a day is probably excessive.
If a healthy person suddenly felt my pain, nausea, and exhaustion they would call out sick and maybe even go to the hospital. But just like everyone else with chronic illness, the longer it goes on the more life is intolerant of your perpetual health issues and all you can do is deal. If you became disabled tomorrow you either have to deal or die.
How one copes varies, but one thing is for sure, unless it happens to you, (and for real I don’t wish this on anyone) you cannot possible understand what it’s like. Please respect that and stop acting like you’re our doctor when you find out our conditions. We’ve heard it all and done it all.
And please stop telling us to push through. You wouldn’t push through flu, or a dislocated shoulder, or fatigue so heavy you feel like you can’t breathe. Stop telling us we’ll feel better if we just did X or Y. Some of us have been dealing with this for a lifetime. Trust us, we know.
Exactly. Dealing is not acting like the disability isn’t there. It’s resting when you need to, making the choices you need, and planning your future with the disability in mind. If we just keep “pushing through” we will burn out faster than a dry stick.
sorry for posting reddit screenshots & i don’t have the capacity to transcribe the images right now but this is such a good analysis of this problem lol
[Image ID: Two screenshots from r/ChronicIllness. User u/Curious_Person111 asks “Why do some people just not get the concept of an illness getting worse over time?” It’s labelled as rant.
“You could lift this box a month ago!” Yes, but I can’t now. How hard is it to get this trough some people’s heads?
ProfessorOfEyes replied
Because they have internalized the ableist belief that health is a direct result of your actions and is something that you earn, and therefore illness should go away and get better if you do the right things. They are used to illness as something temporary that they can prevent or fix by doing the right healthy things, so when they see someone with an illness they cannot control contiuing to be sick or getting sicker, at best it confuses them because they assume u should be getting better, or at worst they think you’re doing something wrong or not trying hard enough and they need to start giving u unsolicited advice or tell u to try harder :/ End ID]
I luckily haven’t had to deal with much chronic pain or hand pain yet, especially with regards to baking (crochet is another story). That said, these look like some pretty solid tips! There’s also some in the comments section.
As this link nears five hundred notes, I’m just… very quietly touched at how many people are sharing it. Whether they need it themselves (or think they will someday), or know someone else who might need it, the fact that all of them are sharing the sentiment of “I want the people who love doing this thing to be able to keep doing the thing that they love” is… yeah. It makes me happy.
I know it’s not the worst aspect of being disabled, but I loathe the sheer amount of rubbish I generate from all my medication boxes and blister packs, and a lot of it isn’t recyclable
Reblogging this comic again as my other one is going around again. I think that this one deserves to be seen, too. Thousands of people have responded to my long COVID story and shared their experiences with long COVID. I wish you could read all of them, but I’ve summarized some of it here.
