Anyone else with a physical illness get told it's in your head, making you want to ctb even more?

[KuriGohan&Kamehameha]

Hardly anyone understands chronic health conditions, unless it is something like (controlled) diabetes or anemia where you need to take a pill or injection and have a blood test every so often to make sure your glucose or iron levels are in the normal range.

People understand those things are often longterm or permanent, they also are aware that there is a physical factor causing the illness. If you have chronic pain or "invisible" illnesses, everyone and their brother is convinced you are faking or malingering, and that you need psychological "help" to improve your condition.

My chronic fatigue syndrome is not "all in my head". Not everything can be regulated by becoming some stoic monk who has absolute control over their emotions. There are PHYSICAL problems including many things classified as mental illnesses that simply are not well understood yet, with no reliable treatments available.

It took years for the NHS and their sycophants to remove the bogus, harmful guidelines that forced people with chronic pain to go to cognitive behavioral therapy or graded exercise therapy. When people with chronic fatigue said it worsened their condition, the gatekeepers would not listen and kept pushing treatments and therapies that were causing iatrogenic harm.

If I hear one more person say it is an attitude problem and not a neurogical, somatic problem causing me to be dizzy and exhausted all the time, I am going to lose my shit. My pain from IBS was invalidated by doctors and played off as "stress" when I was literally starving myself due to the pain from eating. I have to self medicate because they wouldn't prescribe me anything for the digestive pain.

Even if I was to make strides towards improving my condition, if novel treatments became available in the future, I don't think I would want to live anymore after experiencing how horribly this world treats the sick and disabled.

No, it's not in our heads, you bloody fools! Even if it was, by some stroke of luck, it wouldn't make it any less miserable.

 

[262653]

If you have chronic pain or "invisible" illnesses, everyone and their brother is convinced you are faking or malingering, and that you need psychological "help" to improve your condition.

I think about telling to the next person, who will say that I'm feigning my health issues because they're "invisible", that they have no brains because we both cannot see them. (Okay, I've just noticed you made a similar assertion but with more drastic measures. Now I'm tempted to delete mine as not to appear as plagiarist.

In response to the title: so much yes. Nothing like having my issues downplayed, dismissed as made-up and inconsequential, by people who have been fortunate enough not to have those issues. I've been told that my sharping/burning muscle pain is a consequence of poor hygiene, probably because I was being seen scratching my body furiously. It seems that nutrition has alleviated the frequency and intensity of this pain but I still feel like I'm better off non-existent.

(Iatrogenic. Such a wonderful word would be a fine addition to my collection. I'm surprised I've never heard about it before.)

 

[the_final_countdown]

My experience with chronic illness convinces me there are a thousand more diseases that we simply don't understand or know about. And because they don't fall under the textbook classification, they get labeled as anxiety or something spurious.

Medicine has always been that way.

I try not to get angry about it, because it ends up making me feel worse. I simply describe my symptoms without offering any diagnosis, casually nod when the doctor gives me the wrong diagnosis, and then ask for blood work.

It's a human thing. Every once in a while you'll get a good doctor. An understanding doctor.

It's okay. If they could, they'd heal everyone under the sun.

I think it must be frustrating for them at times. Not being able to help.

Have you ever watched the Discovery channel? The way parasites would infect various insects? The apathy of Nature?

Humans live in that world too, though not everyone experiences it at the same pace.

 

[L951788]

Yes. In fact that is essentially how I ended up on this website. First off, hello everyone. I'm new. I'll try to keep my story as brief as possible:

My parents shouldn't have been together and pretty much shouldn't have had me. But I was actually a very smart talented kid. For whatever reason I started getting anxious/defensive at home at 5 years old. No where else. Just home. My mom is an RN and thinks she know everything. She was taking psych meds around the first couple years of my life and has been ever since. So I get doctor shopped to psychologists he all say "He's fine. He speaks to us like an adult." Well, one did recommend my parents splash me in the face with water which they did do. Another punishment which was especially traumatic to me is when they would lock me in my room by unscrewing the doorknob and turning it around so I could not get out. I was 4-5 during all this.

Eventually I end up at a psychiatrist office. He gives me Zoloft. My mom's still not happy. He gives Risperdal as well next. (I've taken bus loads of psych meds over my life won't get into too much detail but all has been pushed by my mom who I now have out of my life with a no-contact order.)

I actually did very well academically and athletically until about 14 when I went off the meds and got severely depressed for 2 years. Right around I went back on them at 16 I started getting severe GI issues. So severe is was greatly affected my day-to-day life in school. Well, obviously, I was not believed. My mom sent me to a psych day program called the "school refusal program" and called in daily to unilaterally make every decision. I still take this damn Cymbalta now at 25 because of her. I can't get off it. Well, the program was a gaslighting joke where I had to spend every day agreeing with them that it was all psychiatric and everything would be perfect when I returned to school.

I eventually got let out and returned to school only for nothing to change obviously. I was also told due to the nature of my absence my school work would be waived. That was a lie. So I spent about 40 days being gaslighted then returned to 40 days worth of missed school work and had to work on staying current at the same time. It was impossible, plus I was going through the GI issues still.

My mom just pulled me out of high school at 17. I was a high honors student, in accelerated classes, some college classes, a multisport athlete, now completely finished. I had been drugged my whole life and gaslighted by my mom and the psychiatric industry into believing anything negative in my life was a problem with my brain.

I've had a few jobs since but none have lasted very long. SSI has been denied 3 different times. In 2015 I had Serotonin Syndrome due to Cymbalta and Trazodone (which I was on because of my mom) and a workout supplement I was taking. I remember the ER doctor being pissed about me taking these things and said "0.5 mg of these things mess with your brain. No one should take these. We had a girl in here earlier this year who had this so bad we had to intubate her."

2015 was a nightmare of constant withdrawals and unilateral psych med decisions my mom. The stupid psychiatrist I saw "dismissed" me from his practice after I Serotonin Syndrome because he could not handle the situation. I was doctor shopped by my parents to numerous psychiatrists after that.

Anyways, it's obviously 2021 now and there's MUCH more that has happened and much more to my crazy story but during 2015 because of my distress my grandmother offered to have me see a functional medicine doctor and I took her up on it.

Turns out I had very bad food allergies. The worst case he had ever seen. Proved all of my allergies with a lab test and I verified it myself after changing my diet. Know what's funny though? My parents told me this doctor was scamming me and he couldn't possibly be right. But of course my parents are both obese and addicted to eating out and junk food so they didn't want to see me eat properly. I am lucky I've never been obese as I've never eaten very much. I've always been normal BMI but the food available has never been very healthy.

So yep. Had very bad food allergies for years and ruined everything and was gaslighted. I've been to hell and back multiple times literally on this side of the planet and the other in the years since. And now I've found myself on a suicide forum. I attempted via acetaminophen overdose at 15 and failed. I've had a few other overdoses since with ibuprofen, acetaminophen, and beta blockers. None have worked. Also tried partial hanging with no success though I could probably make it work if I really tried. If I do end up doing the deed I'll probably go with SN. For now I'm so screwed up it's like I stay alive to see how worse it can get. But it's on the table every single day for now.

So pleased to meet you every fellow person who's life has sucked!

 

[succor]

I missed so much school I'm elementary, middle, and highschool because of my GI issues and the doctors all told me I was too young to be having these problems. Now as an adult almost 3 years old I've been diagnosed with IBS and an unspecified (so far) inflammatory bowel disease, alongside autoimmune hepatitis.
On top of that, I have a connective tissue disorder that went undiagnosed until my late 20's because doctors told me I was too young for my joints to be hurting the way they do and that maybe I just needed to exercise more. I've been told my pain and suffering was in my head my entire life.

 

[L951788]

I missed so much school I'm elementary, middle, and highschool because of my GI issues and the doctors all told me I was too young to be having these problems. Now as an adult almost 3 years old I've been diagnosed with IBS and an unspecified (so far) inflammatory bowel disease, alongside autoimmune hepatitis.
On top of that, I have a connective tissue disorder that went undiagnosed until my late 20's because doctors told me I was too young for my joints to be hurting the way they do and that maybe I just needed to exercise more. I've been told my pain and suffering was in my head my entire life.

Seems many of us have these similar autoimmune response type issues. I actually had to get surgery in 2020 because my lymph nodes in my abdomen and neck were swollen and they had to check to see if it was cancer. Turns out it's an autoimmune type reaction my body has. I'm never going to a doctor again but odds are I have some actual diagnosable autoimmune disease.

 

[the_final_countdown]

I have autoimmune like systems that caused a great deal of suffering.

It's been hard.

I've read the stories of people with chronic illness. The illness is overwhelming but many make their situations worse with negative self talk.

I'm not saying I'm above that. Just that it's added misery I don't want.

I try my best to use neutral language so I don't end up influencing my mind to think worst case scenarios.

If there's a way out, it'll be through the liberation of my mind.

It's not hope I'm after. It's too crushing and fleeting. Just peace.

 

[WhatDoesTheFoxSay?]

I've been told many times to 'keep a positive attitude', and that pain 'is all in my mind'. Empty words and phrases like these do all but add insult to injury, implying that it's YOUR fault for not doing enough to get well. I can be minding my own business when someone barges in to try to sermonize me, sending me into a downward spiral of negative thoughts.

 

[Nodscene]

You can add me to the list. Along with having other health issues I find that Chronic Pain is the one that's most likely to be brushed off by doctor's and specialists (I have been told by a neurologist that it was all in my head) especially with the current uneducated outcry about opiods.

God forbid you need stronger meds than advil or naproxen as you will be classified as a drug seeker immediately no matter how bad your pain is even if you can't even stand up straight and even waking is severely limited. They don't care and it's costing people their lives.

I know this is happening with a lot of other "invisible" illnesses as well and it disgusts me how the severely I'll are being treated.

Sorry to anyone who is also going through this type of situation.

 

[DivineMedicus]

It seems we will always be living in a "dark age" of medicine and healthcare. Despite the acceleration of R&D in the healthcare industry augmented by digital technologies, there are still so many conditions we know so little about. The current education system may be partly to blame as well. Take TMJD for instance: despite the temporomandibular joint being one of the most complicated joints in the human body, most workers in the dental profession receive, oh perhaps, only a couple of classes on the subject before moving on. As long as this trend continues, people with TMJD will continue to suffer.

Most people do not understand chronic pain, and mistakenly associate being in a depressed state as a symptom of the condition. After prolonged suffering from chronic pain, people who have no idea about the intricacies and complexity of chronic pain believe that if you simply choke up to it and smile, your condition will disappear. I think this is a desperate attempt to avoid feeling uncomfortable when dealing with sufferers of chronic pain. I understand this behaviour may emerge from empathy, but they forget (or do not understand) how dire the situation really is.