Poll Having you ever been accused of "faking it"

[Gay Clarke]

After a year of trying to get my insurance company to pay out, they sent an 'occupational therapist' to advise me. It seemed off but I was too tired to realize, he was in fact a psychiatrist. I won't bore you with all the details, just a couple of the really stupid ones.

Him: When did your first marriage end?

Me: Nearly 20 years ago but I was with some-one after that for 13 years.

The report: Mrs Clarke fears losing her husband after a traumatic divorce from her first husband.

My response. No fear, no trauma, no marriage issues, and I think I might have got over it after 20 years even if it were true!!!

Him: Let's talk about this rash that bothers you most of the time. There appears to be no sign of it now.

Me: It's from the strep infection that started all of this. It comes and goes. I listed it as a symptom but it's really not a major issue.

Him: What steps do you take to deal with it apart from medication?

Me: Just keeping clothing simple.

Him: For example?

Me: I have a loose fitting dress I tend to favor. Wash, tumble dry an wear again lol.

The report: Mrs Clarke has an imaginary rash and doesn't get out of bed unless her favorite frock is ready.

When I got the report I was so angry (among other things) I went straight to my solicitor, after giving them a bollocking on the phone which really exhausted me. Luckily I had seen the consultant with the rash a few days earlier and he had photographs. My solicitor, whilst threatening them with legal action, pointed out that even if the report were valid, and it was psychiatric in nature, they would still have to pay out.

The money arrived, backdated shortly after that.

Every once in a while I would ring them and ask to see an occupational therapist to help me get back to work (no way in reality). Every time they would send a real one who would say I was too ill (read 'not worth spending money on'). I just loved wasting their time and money while their own contractors are telling them they are wrong!!!

That's years ago. I really hope things have moved on since then.

 

[ScottTriGuy]

Your experience supports the idea that ME patients should consider audio recording important meetings related to their health.

 

[Gay Clarke]

Your experience supports the idea that ME patients should consider audio recording important meetings related to their health.

Absolutely, from that moment on I recorded and even videoed everything.

I think I still have a video somewhere of an Asian disability doctor saying I could get extra points on the score if I couldn't kneel to pray to Mecca. A few people had a laugh (and more) about that one. I told him kneeling wouldn't be the problem. It would be all that up and down with the hands to pray.

 

[Cort]

After a year of trying to get my insurance company to pay out, they sent an 'occupational therapist' to advise me. It seemed off but I was too tired to realize, he was in fact a psychiatrist. I won't bore you with all the details, just a couple of the really stupid ones.

Him: When did your first marriage end?

Me: Nearly 20 years ago but I was with some-one after that for 13 years.

The report: Mrs Clarke fears losing her husband after a traumatic divorce from her first husband.

My response. No fear, no trauma, no marriage issues, and I think I might have got over it after 20 years even if it were true!!!

Him: Let's talk about this rash that bothers you most of the time. There appears to be no sign of it now.

Me: It's from the strep infection that started all of this. It comes and goes. I listed it as a symptom but it's really not a major issue.

Him: What steps do you take to deal with it apart from medication?

Me: Just keeping clothing simple.

Him: For example?

Me: I have a loose fitting dress I tend to favor. Wash, tumble dry an wear again lol.

The report: Mrs Clarke has an imaginary rash and doesn't get out of bed unless her favorite frock is ready.

When I got the report I was so angry (among other things) I went straight to my solicitor, after giving them a bollocking on the phone which really exhausted me. Luckily I had seen the consultant with the rash a few days earlier and he had photographs. My solicitor, whilst threatening them with legal action, pointed out that even if the report were valid, and it was psychiatric in nature, they would still have to pay out.

The money arrived, backdated shortly after that.

Every once in a while I would ring them and ask to see an occupational therapist to help me get back to work (no way in reality). Every time they would send a real one who would say I was too ill (read 'not worth spending money on'). I just loved wasting their time and money while their own contractors are telling them they are wrong!!!

That's years ago. I really hope things have moved on since then.

Wow.....

You gotta wonder how some people sleep at night....Very enlightening Gay...

 

[GG]

By whom? My Drs? If by people. Don't know, don't care!

GG

 

[Ann 2]

The medical doctor who came to my home to do a Department of Works and Pensions assessment for DLA (Disability Living Allowance) in the UK, marked 0 points on every section of the form, and wrote on every section, 'significant disability unlikely'. I had the assessment at home because my GP had written a letter to say I am too ill to travel to an assessment centre and sit in a chair for the interview.

Because of his judgement, and the lack of detail in the doctor's letter they had received, as well as the fact that my consultant at the pain clinic 'doesn't do DWP letters at all' and because of the nature of my illness, I had a rough time.

I had to appeal and face a tribunal hearing which took place many months later in a building which was not equipped for disabled people. There was nowhere to sit or hold onto in the long polished corridors, a buzzer above my line of sight so that I was left standing leaning on the building in the cold waiting for my friend to park the car several blocks away before I could even go inside, as I was too short to see the tiny labels that show which buzzer to ring. There was a lift without handrails of any kind, and no signs in the corridors--only a signs inside the room, which could be seen through a small window in the door, so we had to try more than one floor and then walk the wrong way first to determine which was the proper room by process of elimination. This, I assume is for security reasons. Too bad it is a place where disabled people have to go to prove they are disabled! There were only lightly padded armless straight chairs in the waiting room. and straight chairs in the hearing room which had wooden arms on them. As I had been house bound for over two years and unable to walk without leaning on my walls and furniture, too unsteady and unpredictable in my balance to feel safe not to trip over a walking stick, and not having got any help with other aids to that point, I had to make my way in this building by holding onto polished marble walls and tables, taking a few precarious steps between gaps.

At the tribunal hearing, I was verbally abused and many things insinuated about my statements, especially by the doctor on the panel of three (which consisted of one legal person, one doctor, and one representative of the DWP.) For example: one of them asked, "If we had had a Big Brother camera outside your building during the last year, what would we have seen?" When I explained that most mornings I am in a state of pain and exhaustion near paralysis or actual paralysis and cannot get up to go to the toilet or get anything to eat for at least two hours, I was asked "So, are you able to get out of bed? Yes, or No?" Of course I repeated what I had just said. They reminded me that on the part of the form where it asked if I needed a hand rail or someone to get me out of bed, I said NO. When I had filled out that form with the help of a 'benefits advisor' who simply asked the questions and hurried me along, I'd thought about it and decided that a hand rail or someone to prompt me would be useless if I am physically unable to get up. That was my reason for the NO reply to that question. But they kept asking me "Yes or No?" I could not answer, as it depends on whether I am in this state or a better one. At one point, the doctor asked me in a voice full of sarcasm and anger, "What do you want from us, to go to your house and carry you about and put food into your mouth?" I honestly believed I might be in a nightmare and would wake up from this ordeal. I'd taken my only friend with me. She left the room in tears, and I felt even more alone. When she came back they actually asked her why she had left! After browbeating me for keeping them there more than an hour (All I had done was answer their questions) and telling me that it was my fault the next person scheduled after me had to be sent home as they were already at the end of their day, they let me go. I had been slumped in the chair most of the time, a position which, the doctor implied, was one of avoidance of looking at her during her questioning. It was the most horrific experience of my life. Two days afterward, I got a letter telling me I had been granted the low level rate of care and mobility benefit.

This was not the only time I've been accused of faking illness, but it was the worst.

Joann that is all awful. I hope you have contacted your MP. Low rate is not acceptable. It's terrible how sick people are treated. No one asks to be ill.

 

[Reerob926]

Not directly. People will say I look tired or ask me to "hop on a plane and come for a visit" despite having been told repeatedly that I suffer from FM/CFS and can barely maintain a work at home job. They forget... I don't blame them though. It's just how folks are.

 

[Reerob926]

That's difficult to answer. I'm like Lisaadele - I've felt like its in the background at times; like c'mon just get over this. ..but honestly I've been really lucky. My family has been really supportive.

My immediate family has been supportive, but I don't know how much longer I'll be able to continue working. I've put in decades to get where I am, and am truly stressed about keeping up with job demands. Falling asleep in meetings is the worst (dark room, someone droning on during a 2 hour PowerPoint presentation). I worry they'll think I'm drinking or using drugs -- I do neither. I'm doing my best, but that's about 60% of what it should be. Before onset 20 years ago, I would've run circles around everyone. That's the hardest part: remembering what you were capable of doing before.

 

[jaminhealth]

Not faking it so much but some and even doctors question this FM dx. As have I. I've never been sick with it and believe Grape Seed Extract has been a huge factor in it all. Getting thyroid supported after 10 long years of NOT getting help. There are links about the FM thyroid connection.

Some say FM dx is a basket of stuff gone wrong and doctors gave it this name. A booklet I got back in 1999 says it's close to the rheumatism family.

 

[Farmgirl]

About faking: 1. There are probably individuals on those sites from all sorts of places, so we must keep that in mind 2. Yes, I have either directly or indirectly had that label inappropriately placed on my already weary shoulders "sigh".

Worse time was when I was unable to attend a social function with the fam. My 8 year old daughter , on arriving home (me still in bed) told me that one of our adult female friends ask if her mom was "faking it". Knife to the heart! Ouch.

If you have a headache or a cold and mention that to another person, they can "get" it...why? Cuz they have experienced it! I can't believe there is a person on this earth who can "get" what we are feeling unless they have lived it...even if you try your best to describe it. Instead of all these fancy fancy blood tests, let's all invent a special machine you hook up to someone else so they can feel what you feel for a day, week, month, year...THEN they'll "get" it. Okay' so we can keep it just to a few days to minimize their suffering, but make sure they try to exercise during that time.

 

[Abrin]

I have never had anyone accuse me of faking it but I have had several people tell me that I 'needed to get my priorities straight' which I assume is a nice way of saying that they think I am over-exaggerating my symptoms.

When I ask them what about my priorities I need to get straight, they will point out to me that if I have the energy to be on the computer all the time then I obviously have the energy to do things like walking around, cooking and housekeeping.

Yeah, because typing on my laptop while flat on my back for a few hours a day totally takes the same amount of energy as moving around would.

Grrrrrrrrr

 

[jaminhealth]

I still say thyroid is so connected to this FM dx. I went thru Emotional Trauma at about 63 and for 10 yrs prior I was TRYING to get thyroid support and docs kept telling me labs are good. Once I finally got my D.O. to call in for desiccated support to CVS 10 yrs of depression lifted.

I keep thinking the FM stuff hit me so hard was due to weak thyroid. So many doctors don't get the thyroid right for us. I've been on many thyroid groups since. I'm 79 now and on desiccated support since 2002. First Armour and now NT as Armour prices went so high. Synthroid is called SynCrap by many on thyroid groups.

 

[Farmgirl]

My immediate family has been supportive, but I don't know how much longer I'll be able to continue working. I've put in decades to get where I am, and am truly stressed about keeping up with job demands. Falling asleep in meetings is the worst (dark room, someone droning on during a 2 hour PowerPoint presentation). I worry they'll think I'm drinking or using drugs -- I do neither. I'm doing my best, but that's about 60% of what it should be. Before onset 20 years ago, I would've run circles around everyone. That's the hardest part: remembering what you were capable of doing before.

I really feel for you! I have been ill a very long time so I don't really know what normal is like, but just tried to help out a friend with her sick mother and I had to stop. Made me sad. I hope you can get through.

@

 

[Farmgirl]

I have never had anyone accuse me of faking it but I have had several people tell me that I 'needed to get my priorities straight' which I assume is a nice way of saying that they think I am over-exaggerating my symptoms.

When I ask them what about my priorities I need to get straight, they will point out to me that if I have the energy to be on the computer all the time then I obviously have the energy to do things like walking around, cooking and housekeeping.

Yeah, because typing on my laptop while flat on my back for a few hours a day totally takes the same amount of energy as moving around would.

Grrrrrrrrr

@Abrin yeah, many of us can lie in bed and type....no PEM afterwards! You just stand on the ground under your feet and remember that many people just don't "get"it. I was pretty well known in my community and heard all sorts of comments.

 

[Tracy Williams]

Family members, doctors, co-workers, friends, strangers on the internet. I know me/cfsers and fmers get accusd as a whole of faking it all the time, but... Have you ever personally been accused of faking it?

I am one of those rare people who was diagnosed by my regular MD and I wasn't having it. So to prove her wrong I went to a specialist who confirmed the diagnosis of fibromyalgia so I went to the worlds most foremost authority (at the time) Dr. Mease and again it was confirmed so it wasn't someone else who accused me of faking it it was me who resided that I must be crazy and I'm manifesting these symptoms in my head so I went to a psychiatrist who again assured me that I had it. What I did find that was odd was the vast differences of opinions as to what triggered it after living 35 years completely hyperactive. Most told me I must have had a severe car accident or something of that nature and my psychiatrist told me that I had to have been sexually abused as a child and oh by the way I'm retiring and this will be our last visit.?! I've been seeing him for 20 years for ADHD and he lays this on me on the last visit. Basically no one said the words " you are faking it" but they said it in their body language the rolling of their eyes and when I tried to explain it they would say "why do you have to always talk about yourself". That was my favorite brother. I've been accused by all of my family of being a drug seeker. So I'd isolate and then they would say "that's what addicts do when they're using. Luckily my husband of 25 years is super supportive and eventually 1 then another and another coworker would come to me and say they too have it but are afraid to tell anyone. I chose to educate but in the end they manufactured reasons to let me go after working for the State for 17 years with perfect reviews up until the last 4 years. People say to educate others but there is such a risk. It's not like any other disease where people would gather around you falling over themselves trying to help. Where's my damn casserole? Lol

 

[Farmgirl]

I am one of those rare people who was diagnosed by my regular MD and I wasn't having it. So to prove her wrong I went to a specialist who confirmed the diagnosis of fibromyalgia so I went to the worlds most foremost authority (at the time) Dr. Mease and again it was confirmed so it wasn't someone else who accused me of faking it it was me who resided that I must be crazy and I'm manifesting these symptoms in my head so I went to a psychiatrist who again assured me that I had it. What I did find that was odd was the vast differences of opinions as to what triggered it after living 35 years completely hyperactive. Most told me I must have had a severe car accident or something of that nature and my psychiatrist told me that I had to have been sexually abused as a child and oh by the way I'm retiring and this will be our last visit.?! I've been seeing him for 20 years for ADHD and he lays this on me on the last visit. Basically no one said the words " you are faking it" but they said it in their body language the rolling of their eyes and when I tried to explain it they would say "why do you have to always talk about yourself". That was my favorite brother. I've been accused by all of my family of being a drug seeker. So I'd isolate and then they would say "that's what addicts do when they're using. Luckily my husband of 25 years is super supportive and eventually 1 then another and another coworker would come to me and say they too have it but are afraid to tell anyone. I chose to educate but in the end they manufactured reasons to let me go after working for the State for 17 years with perfect reviews up until the last 4 years. People say to educate others but there is such a risk. It's not like any other disease where people would gather around you falling over themselves trying to help. Where's my damn casserole? Lol

Totally get that last line!!! I laughed on and off for days about it, too! Totally!

 

[Farmgirl]

I still say thyroid is so connected to this FM dx. I went thru Emotional Trauma at about 63 and for 10 yrs prior I was TRYING to get thyroid support and docs kept telling me labs are good. Once I finally got my D.O. to call in for desiccated support to CVS 10 yrs of depression lifted.

I keep thinking the FM stuff hit me so hard was due to weak thyroid. So many doctors don't get the thyroid right for us. I've been on many thyroid groups since. I'm 79 now and on desiccated support since 2002. First Armour and now NT as Armour prices went so high. Synthroid is called SynCrap by many on thyroid groups.

@jamin Yes, I think it can all be connected. The HPA axis is off in ME/CFS...but not enough study is being done. At 32, I started with Hyperthyroidism while pregnant, then ended up Hypothyroid with Low TSH AND low T4. They were forced to treat me anyways, which revealed low cortisol. Then, they removed my Thyroid for a tumor and refused to give me any thyroid because my TSH was too low! I was shocked. They finally gave me some. Now that I don't have a thyroid, my numbers returned to a reasonable my "normal" state, though my TSH never moves much when my T4 and T3 do. Have you read The Thyroid Solution?? Good book.

I am 55 now and have never had a consistent dose of thyroid med..until finishing menopause. Needed a dose change constantly. Cannot handle Armour!!! Makes me so hyper!! Had to take separate T3 and T4 for years. Isn't it amazing how fast the mental fog clears in the right thyroid dose? I have awful body-wide pain...day in day out. Just started LDN...what a miracle for me! Doesn't get all the pain, but a lot if it. You?

 

[Lissa]

Totally get that last line!!! I laughed on and off for days about it, too! Totally!

ME TOO! Where is it??!! I want my CASSEROLE!!!

 

[Homina]

Some of the people that should be supportive in my case are not
They don't believe I am sick because they are not sick like this

 

[Not dead yet!]

Something new that's happening, since I've started the wall of silence with nurses in medical offices, I've noticed that they demand things of me that I can't deliver. Like being very very punctual (some complain of a 5 minute delay), or being able to drive there two or three times a week. I'm always like "no I want to make one trip, so schedule my labs and doctor visit on the same day." It's interesting because I've had doctors who will wait for an hour for an elderly person to arrive, but if I'm 5 minutes delayed, boy howdy.