Poll Having you ever been accused of "faking it"

[TJ_Fitz]

I've only had one person, a social worker, ever come out and say that there was nothing wrong with me and that I just basically needed to suck it up. I've had others who were more delicate and only implied that I was malingering, and even more than that who seemed to be thinking that (including my own family) but wouldn't comment to that effect.

 

[RKB]

I fell ill just a few months before my third birthday. Meningitic infection which left me with multiple disabilities and with the characteristic pattern of relapse/"remitting" (never full remission) return or worsening of symptoms following any attempt to be physically or cognitively active, or minimal sensory input exposure (light/sound). My story of the abuse I've endured for having contracted that virus when I was two years old is actually too painful to even write about here. What a stupid little twit I was - clearly I shouldn't have done that. Then I wouldn't have DESERVED how people have treated me since then :/. Honest to god, you would not believe the things people have said and done to me over the years. I am now 35 years old.

I've written a series of articles about the science of this disease, about the cruelty both intentional and unintended, about what it feels like to live with Myalgic Encephalomyelitis, and why it is not appropriate or accurate to refer to this disease as "CFS" or as "M.E./CFS". Anyone who's interested can find the articles here:
www.riverby.wixsite.com/riverby/atypical-ms-about

And specifically re why "M.E./CFS" is not correct can be found here:
www.riverby.wixsite.com/riverby/sound-the-trumpets

 

[Lettie]

I had a auto accident and did not recover within the timeline i was told I would. (I didn't know yet that i had Fibro and CFIDS yet.) So, innocently, i went to the referred doctor asking about the fatigue and slow healing; And a request to sign some health insurance paperwork.

I was shocked when he raised his voice and in an agitated state informed me that my complaints were made up. That i was taking advantage of my employer and health provider by filing a false claim against the person who hit me and his insurance company. He alluded that the issue was my lack of integrity.

Well, I was self-employed, honest, and hard working. Paid for my own limited health care. The kid who hit me was drunk, driving without a license, uninsured, and dead. I was a passenger in my friend's vehicle (token ins. coverage) returning from my birthday celebration. And i certainly was very ill from the day of that accident onward for the next 20+ years. He was wrong on all scores. These were his projections, i realized. Not mine.

It was an important lesson that would serve me over the coming years when more would question, accuse, imply or just be recalcitrant in attitude or treatment. True caring professionals don't project their own issues or judge you for yours. They serve and do no harm.

 

[TJ_Fitz]

I think part of the problem we have with medical doctors is that the process of becoming an MD attracts tough, aggressive people, and weeds out the more sensitive and compassionate souls. It's hard to empathize if you've never suffered yourself. I've had much better experiences with nurse practitioners than with MDs.

 

[Christina Bullins]

Thank goodness I have never been accused by a doctor of faking it. Even when my primary didn’t know why I was sick and running fevers all the time, my general IgM tested extremely high so she knew I was sick and I was then just referred to the best doctors. My huge problem is in my personal life. I never see my sister who I used to be close with...I really don’t think she can grasp that when I’m tired it’s much different or how very serious the totality of my health is. My husband goes back and forth. He is an insulin dependent diabetic (he’s thin/Type 1) and sometimes I feel like saying sure live like insulin was never found and then maybe you will get it. I have a couple of friends who do understand it but have very busy lives or out of state. I lost my mom in 2010 right before I was diagnosed. I could have never imagined living so incredibly alone. I was very independent before and did fine living alone, doing things alone. This is entirely different. I don’t even talk to anyone anymore hardly about what’s going on with my health...it’s easier than to give someone a chance to invalidate you. If it was for my faith in Jesus, I can say I would never get through this. I also of course have fibromyalgia but also Hashimoto’s Encephalopathy. Premature ovarian failure at 34 ensuing bone problems now which I already have a spine and body full of past injuries. It has not been a good year and I’m doing the worst I have ever been. So if you have supportive people, hug them, tell them and be ever so grateful for them.

 

[ponypanic]

My primary care doctor, who diagnosed me, and who is someone I like and respect - actually told me he "cannot commit insurance fraud" as he was preparing to sign papers supporting my disability. I felt horrified.... Belittled... Confused.... What what???!!! How could he say that to me? He did believe in me, he did sign the papers, he did understand the reality of ME/CFS. So why did he have to say such a thing?! I left his office feeling terribly confused, and dismayed that it had even entered his mind.

He needs reporting to medical board!!!

 

[Apo Sci]

Definitely with the public and a few times by extended family. One physician provider told me he "doesn't believe in disability" (I hope he gets ME). My PCP thought graded exercise might help so I did a course but it only was able to increase muscle strength 20% but still far below my normal and that convinced him that it was ineffective. He has built trust in my judgement. I think the insurance propaganda compaign to paint ME as a mental illness so they could get out of paying long term disability claims tained a lot of opinion.

I really appreciated my neuropsychology exam report which specifically stated I was negative for malingering. I was very impaired on the cognitive recall portion due to ME HHV-6 virus. I could not name more than four animals starting with a letter before my frontal cortext froze up.

Medical boards don't defend disabled patients. They only care if a MD grossly deviates from the standard of care.

 

[Apo Sci]

after giving them a bollocking on the phone

That is funny. I imagine you kicking them in the scrotum repeatedly.

 

[GrammaLinda]

Some people have psychological issues and / or a personality disorder.

You may have just encountered one of them.

I know what you mean. I was accused of that very thing several times. I had counseling for over a year. All we did for an expensive hour was shoot the breeze, he Rx many pills, I had no personality with those pills, and physically I only got worse.

I've been posting on a chronic pain and disability forum the past few weeks and asked an innocent question about starting a disability case. Another member accused me of faking, multiple times in the thread, for refering to disability as "building a legal case"... It really upset me because I expect better from the chronic illness/spoonie community than to accuse others of faking with no evidence. I have read a lot of resources and personal stories of people applying for disability and have never once seen anyone take issue with this terminology until now. In fact it seems pretty common to use the phrase, especially if you are a lawyer?

I've never spoken to this user before so it's not like it is a personal grudge, though I honestly wish it was. I think it really got to me because no one has ever been so direct with the accusation before, and most of the time it comes from simply from completely misunderstanding chronic illness in kind of an innocent way that can be educated. But this accusation came from someone who is also chronically ill, with some of the same disorders in fact, and who is applying for disability "honestly and with their own merrit, only seeing doctors when absolutely necessary" (paraphrase, not exact quote).

Nobody has actually used that word, but I got the gist of their response to me. Doctors, former spouse, psychiatrists, Mayo Clinic, emergency room personnel, etc.

 

[Apo Sci]

The most serious "faking it" accusation is when you apply for Soc Security Disability benefits. I had to fight for four years to get approved and it was only because I obtained a full neuropsychological exam to document my cognitive deficits.

 

[Isander]

I was misdiagnosed as being mentally ill in the UK for thirty years. And had some. interesting DLA medicals as many of you did. As I really could barely walk . I got DLA awarded for life by a great dr. on a home visit but before then... Finally I was referred to a consultant physician in Aberdeen of great reputation who admitted me for three weeks and tried his darnedest to prove anything but what he finally called post viral fatigue. I had no idea what that was but a neighbour said it was ME. Which I knew nothing about except it was controversial. I had the internet by then. My then GP averred that M.E was of course partly mental illness so I spent a year getting off allt he JUNK I was one ten left the UK for good. I came to ireland where most drs have never heard of M.E When I reached pension age I cheered as no more medicals needed. I hoped things over thee had changed.

 

[Baz493]

I'm close to getting the diagnosis of occupational-induced COPD, with related autoimmune myopathy and gastrointestinal damage, after seven and a half years of having had to put up with medical gaslighting, claiming that I was faking my ill-health and disability. This was all a consequence of psychiatrists deciding that, although my symptoms didn't perfectly fit with any psychological diagnosis, they would go ahead and guess, canceling medical investigations and refusing to believe anything I told them which didn't fit with their theory. It took me five years just to recover from their medication, which caused thunderclap headaches and RCVS. I still can't understand why Australia is currently embracing psychiatry as though it solved all of the worlds problems.

 

[ginag]

I've never had anybody directly accuse me of "faking it." But most people in my life (and in the world) probably make false assumptions about me and ME/CFS patients in general. I think they assume I feel better than I do and that I could accomplish a lot more.

Part of it may be my fault, because I avoid talking about my illness. I usually try to manage my life so people don't see me at my worst. Besides, I'm not the type of person who moans and groans about things anyway.

I like to say, "I explain, not complain." When someone wants me to do something I can't do, I might explain that I have a bad headache or I'm too tired to sit through a long meeting. I'm not complaining or trying to get sympathy. I'm just trying to explain the reality of my life.

Your words resonate with me. People think and say I feel and look terrific when I am pushing to get through each day due to the fatigue, brain fog, migraines. I do not talk about my illness. Only my immediate family know. There were a few people over the years I tried to share with at work, and they had no understanding. As I listen to people all around me "moan and groan" about lesser things, I feel it best to keep private. It would be too exhausting to explain. That's why I sought out a support group.

 

[Baz493]

ginag, Nearly thirty years ago I experienced a year of chronic fatigue. It was really funny because I had enough energy to cope with work, lifting around heavy mould gear, and yet I would be completely exhausted by the time I got home and would remain so until I returned to work. One of the luckiest things which ever happened to me was finding a used copy of a book called Tired all the time by Dr Ronald L Hoffman. It fell open to the page I needed the moment I picked it up; my guess is that the previous owner had the same toxic exposures. I was working with a solvent called trichloroethylene. When you are exposed to it the chemical fills in for part of the cycle of aerobic respiration and when it isn't the cycle collapses and enters anaerobic respiration. Doctors had been useless; always repeating that I needed to drink lots of water and get plenty of rest. Since that time I have learnt a lot about a variety of different reasons for the body switching over to the use of glycolysis for energy production. Toxic exposures, pituitary failure, thyroid, adrenal, kidneys, liver, etc. It's not something that you want to ignore for long as some of them can kill you and doctors don't have all of the answers.