I am so tired of the chronic illness community.

[miserableherself]

Stop telling me that a life full of pain can also be full of happiness. I am not a soldier or a warrior. I didn't ask for this. I don't want to suffer, and I am so tired of being told I just need to dedicate myself to acceptance therapy. I wish they would all stop. Stop it all. I don't want to be in pain.

there is nothing more frustrating to me than people who claim "if i could take away my illness i wouldn't, it makes me who i am", it's bullshit. i would give anything, ANYTHING, to not suffer everyday, to not have my family worry every night because i may not wake up. it does not 'make me who i am', that is giving the disability so much power. it has ruined who i am and has made my life miserable and exhausting.
it just feels like a way to make able-bodied people more comfortable with our struggle, but that is not our job.
these people need to know how hard and painful life is for the majority of us so they can appreciate and acknowledge their privilege.

 

[KuriGohan&Kamehameha]

Thank you for posting this. This is one of my biggest struggles and something which has constantly made me feel insane, because I've consistently dealt with other people acting like being unable to accept the reality of being chronically ill means that I'm not trying hard enough and I should be forcefully put through more useless and potentially damaging psychological interventions and drugs as a result of it.

Many years ago, when I got diagnosed with autism in high school, I was told bluntly that I had a developmental disability which could not be cured or mitigated in a significant way due to my age. Over time, I had to learn to accept this, but you would not believe the amount of people who think autistic behaviours are a choice or something you can subconsciously control.

I went through so much bullshit therapy (that ended up harming me worse) where I was berated for my odd body language and mannerisms, and was constantly forced to make eye contact or "be aware" of how weird I was. Of course, like you would expect, this didn't fix me in the slightest. Over time I have learned I just have to (unsuccessfully) attempt to hide that I have a disability in order to survive, which is a stark contrast to this false messaging about inclusion that's plastered everywhere nowadays.

When I developed CFS and chronic pain, I was met with this same nonsense from every corner about how I could control my "reactions" to my symptoms. While a lot of the scorn I've received has been from healthy and neurotypical people, it was shocking for me to constantly be put down or disbelieved in chronic illness communities of all places too. There are constant pissing contents of who has it worse, who is "faking" and the non-stop support of scam artists and snake oil salesmen offering thousand dollar mindfulness brain training courses to desperate sick people. Often times people don't even make an attempt to read your story and then just spout go to therapy again even when you've shouted a thousand times that you weren't helped by x y and z in the past, they'll reccomend it anyway.

When you have a chronic condition, whether it be considered physical or mental in the minds of others, it is hard enough to find support and understanding. It cuts deeper though when other sick people tell you that you aren't trying hard enough to get better or that you're not trying hard enough to be happy. Sometimes, there is no happiness, and I've accepted that for myself.

 

[TheDog_]

Thank you for posting this. This is one of my biggest struggles and something which has constantly made me feel insane, because I've consistently dealt with other people acting like being unable to accept the reality of being chronically ill means that I'm not trying hard enough and I should be forcefully put through more useless and potentially damaging psychological interventions and drugs as a result of it.

Many years ago, when I got diagnosed with autism in high school, I was told bluntly that I had a developmental disability which could not be cured or mitigated in a significant way due to my age. Over time, I had to learn to accept this, but you would not believe the amount of people who think autistic behaviours are a choice or something you can subconsciously control.

I went through so much bullshit therapy (that ended up harming me worse) where I was berated for my odd body language and mannerisms, and was constantly forced to make eye contact or "be aware" of how weird I was. Of course, like you would expect, this didn't fix me in the slightest. Over time I have learned I just have to (unsuccessfully) attempt to hide that I have a disability in order to survive, which is a stark contrast to this false messaging about inclusion that's plastered everywhere nowadays.

When I developed CFS and chronic pain, I was met with this same nonsense from every corner about how I could control my "reactions" to my symptoms. While a lot of the scorn I've received has been from healthy and neurotypical people, it was shocking for me to constantly be put down or disbelieved in chronic illness communities of all places too. There are constant pissing contents of who has it worse, who is "faking" and the non-stop support of scam artists and snake oil salesmen offering thousand dollar mindfulness brain training courses to desperate sick people. Often times people don't even make an attempt to read your story and then just spout go to therapy again even when you've shouted a thousand times that you weren't helped by x y and z in the past, they'll reccomend it anyway.

When you have a chronic condition, whether it be considered physical or mental in the minds of others, it is hard enough to find support and understanding. It cuts deeper though when other sick people tell you that you aren't trying hard enough to get better or that you're not trying hard enough to be happy. Sometimes, there is no happiness, and I've accepted that for myself.

It's baffling how therapy is praised by the chronic illness community when it's been consistently used to invalidate one's suffering

 

[HD72]

Chronic Illnesses and Physical Diseases Megathread

I have encountered multiple members here who, like myself, have chronic conditions and illnesses. I have met members here with a variety of physical diseases (chronic, terminal or otherwise). I thought it would be useful to have a specific thread for that and a space where people can talk about...

sanctioned-suicide.net

I think what we are looking for are people in chronic pain who want to end it. U don't see people like that on the partners thread. U don't see someone who's in physical agony who needs out but who has no means to help themselves. Or at least they don't mention it. I'm n so much pain. I need out. I have no one but my mom. She won't help. If I go to the ER 4 the pain they'll label me psychotic and throw me on meds which will do even more damage than they already have.

 

[Dot]

It's baffling how therapy is praised by the chronic illness community when it's been consistently used to invalidate one's suffering

Wre u evr tld abt th/ PACE stdy

 

[HD72]

Wre u evr tld abt th/ PACE stdy

That sounds familiar. I need to look it up

That sounds familiar. I need to look it up

Are you talking about the study done for CFS.

 

[Dot]

That sounds familiar. I need to look it up

ME/CFS stdy headd up b/ a 'leadng' psychtrst & prtly fundd b/ UK disblty benfts dpartmnt

Thy wre basclly tryn2 shw tht ME/CFS = psychlgcl cnditn tht cld b treatd wth CBT & gradd exrcse bcse ppl r jst 'afrd of exrcse'

Whle stdy ws d-bunkd

 

[HD72]

ME/CFS stdy headd up b/ a 'leadng' psychtrst & prtly fundd b/ UK disblty benfts dpartmnt

Thy wre basclly tryn2 shw tht ME/CFS = psychlgcl cnditn tht cld b treatd wth CBT & gradd exrcse bcse ppl r jst 'afrd of exrcse'

Whle stdy ws d-bunkd

Yes. they pushed that on a young girl here and almost killed her. When her parents tried to remove her from the program the hospital took custody of her. Said they were being abusive and denying her care.

 

[Dot]

Yes. they pushed that on a young girl here and almost killed her. When her parents tried to remove her from the program the hospital took custody of her. Said they were being abusive and denying her care.

Yh mny ppl hve bn removd frm parnts

1 grl in own area ws 4rced in2 a psych wrd bcse of hr illnss

Th/ rsearch psychrst attmptd t/ gs-lght th/ whle commnty & sy tht suffrrs r 'hystercl' & prevntng rsearch frm happnng

ME and the perils of internet activism

Research into the chronic illness, which affects 250,000 people in the UK, may be stalling because of bitter online criticism

www.theguardian.com

Whle @ th/ sme tme othr rsearch journls wre rleasng dedic8td issus on hw terrble th/ stdy ws

https://journals.sagepub.com/doi/full/10.1177/1359105317722370

Yt tht stdy ws usd t/ coerc ppl in2 therpy tht ws damgng 2 thm

Sme1 in UK cfs cmmunty ctb shrtly aftr

Aftr lts of tht 'actvism' th/ therpy ws finlly removd frm UK treatmnts

Chronic fatigue syndrome advice scraps exercise therapy

The long-awaited advice makes it clear that exercise is not a panacea for the debilitating syndrome.

www.bbc.co.uk

 

[Lost Magic]

Hell, right now I have severly painful toothache (waiting for a dentail extraction). I couldn't even imagine dealing with that level of physical pain for long durations let alone what other poor people have to suffer. My mental anguish is enough. Any form of extreme pain wether physical or mental is completley draining.

 

[HD72]

Hell, right now I have severly painful toothache (waiting for a dentail extraction). I couldn't even imagine dealing with that level of physical pain for long durations let alone what other poor people have to suffer. My mental anguish is enough. Any form of extreme pain wether physical or mental is completley draining.

I have so much pain and they throw me on psych meds and now I can't sit still or sleep. I feel like I can't quit moving. Pins and needles all over. Panic. Shear panic. I can't escape. And my mother tells me to color. Draw. Being on here is the best I can do.

 

[carac]

This is controversial but I do believe that a lot of chronic pain and cfs and many other conditions are rooted in a psychological process. Why do I believe this? Because it is how I cured my own chronic pain and on my journey I have encountered many other people like me and people that conquered cfs and other illnesses, even long covid through addressing psychological issues.

The big problem is the way this is approached in the medical community and the lack of understanding and empathy. Firstly the pain is not in your head, it is real physical pain and symptoms. Secondly you cannot simply think or ignore the pain or symptoms away you have to address the underlying trauma and personality traits that are driving it.

I fully accept that for some peope this is not the solution and to those people I apologize and you have my sympathy but to other people I say do not lose hope there could be a chance that not only do you have to manage your pain but you can reverse it completely.

 

[Kta1994]

I think people, well I simply couldn't believe others could be in so much pain with all this medication we always hear about. Truth is the pain medication will only do so much, it becomes what level of pain can you tolerate? Chronic pain will make anyone want to ctb, it's difficult to wake up everyday and know you will be in pain..life is hard. I'm sorry you have to deal with this

What pain medication? Due to the fake opioid crisis novody gets opiates anymore

 

[HD72]

This is controversial but I do believe that a lot of chronic pain and cfs and many other conditions are rooted in a psychological process. Why do I believe this? Because it is how I cured my own chronic pain and on my journey I have encountered many other people like me and people that conquered cfs and other illnesses, even long covid through addressing psychological issues.

The big problem is the way this is approached in the medical community and the lack of understanding and empathy. Firstly the pain is not in your head, it is real physical pain and symptoms. Secondly you cannot simply think or ignore the pain or symptoms away you have to address the underlying trauma and personality traits that are driving it.

I fully accept that for some peope this is not the solution and to those people I apologize and you have my sympathy but to other people I say do not lose hope there could be a chance that not only do you have to manage your pain but you can reverse it completely.