Being Accused of Self Diagnosis

[Carrigon]

UGH, so my aunt told me today that I self diagnose and couldn't possibly have half the conditions I say I have. And I was like, really, my medical records all say I do. And I'm taking real prescribed meds from real doctors. The ignorance boggles the mind.

I wrote the millionth letter describing in detail all the lovely things we get with this disease. And I think, this time, I did get under her skin, even just for a moment. Because her response was that I am too young to go through these things.

People will go to any lengths at all to deny we are sick. The truth of it is, and I flat out told her this, they don't really want to help me. But instead of saying they don't want to help me, they keep putting it all on me. Every time I am not well enough to do something they want, they accuse me of being lazy, unwilling to help myself. So that way they can say they won't help me since I won't help myself.

My relatives matter little, unless they are looking to cause me trouble. But I let them know today, they are dealing with the wrong one. I let them have it in a long, long letter. And I definitely hit nerves with it. I told my aunt it is an unforgivable sin to accuse someone of faking their illness. I was surprised I got that little chip in her armor, that little slip, "You are too young to be dealing with all this". Of course she will probably go back to being the monster she is, but somewhere in her brain, she knows I'm right.

 

[mellster]

Sorry to hear that. It goes back to the fact that humans cannot and don't want to imagine other people's sufferings. If they could, nobody would go to war anymore, because clearly the option of settling with each other is always favorable to eventually losing your health and suffer. There might be a few who have the gift of empathy to imagine what a chronic illness patient goes through, but I am not even sure about that. They might just be very good people but still cannot imagine what it's like. Not sure if this helps, but I think you can only fight so much, so at some point you either cut them out of your life or you have a (friendly) talk where you settle on a compromise that both can live with. All the best and good luck!

 

[Gavman]

My mum was like that i believe. You'll find some people are peacemakers and wont be able to identify with things not being 'right'. I angrily told her that sometimes i just need to express myself, sometimes i will be wrong regarding my own health but i want to talk about things without being criticised or interrupted sometimes. Since then she has questions for me and talks to me about health things too.

 

[maddietod]

My Mom found a letter in the Washington Post that exploded her brain. "Chronic Fatigue is Overlooked" She called to read me the first 2 paragraphs, but not the third. I went and found it in my paper, and near the end it says: "...and what do we have? A long string of doctors, counselors, well-meaning friends and uninformed relatives telling us to cheer up."

I think she was stunned to see her efforts to cheer me up painted as delusional. She still isn't asking me any obvious, useful questions about CFS, but she's being really really nice to me.

You never know what will wake them up.

Madie

 

[Carrigon]

My monster aunt went right back to being the close minded devil she is. And her sadistic husband said to me, "so you have a FEW health problems, get out there and work". And he told me I'm an embarrassment to my dead mother for not working. My mother would have been proud of me for standing up to him. She would have told me I wasn't her daughter if I didn't stand up to him. I responded with a nice calm letter telling him all the ways he's a sociopath who enjoys making fun of disabled people. And I told him my mother knew how bad he was, which she did. And now I've had peace for a few days. These devils can dish it out, but they can't take it. I do think they are crafting one final poison pen letter. We shall see. But they're going to be very surprised, cause I'm going to cut this off for good. I've had it. If they want to play sadistic games on someone, they picked the wrong one.

I just don't get how you can live for so many years on this earth and not have a single clue what goes on in it. My aunt was a college professor with a phd. Obviously she never belonged teaching if she's that ignorant of the world.

 

[Sallysblooms]

Sorry you have to deal with that!

 

[heapsreal]

UGH, so my aunt told me today that I self diagnose and couldn't possibly have half the conditions I say I have. And I was like, really, my medical records all say I do. And I'm taking real prescribed meds from real doctors. The ignorance boggles the mind.

I wrote the millionth letter describing in detail all the lovely things we get with this disease. And I think, this time, I did get under her skin, even just for a moment. Because her response was that I am too young to go through these things.

People will go to any lengths at all to deny we are sick. The truth of it is, and I flat out told her this, they don't really want to help me. But instead of saying they don't want to help me, they keep putting it all on me. Every time I am not well enough to do something they want, they accuse me of being lazy, unwilling to help myself. So that way they can say they won't help me since I won't help myself.

My relatives matter little, unless they are looking to cause me trouble. But I let them know today, they are dealing with the wrong one. I let them have it in a long, long letter. And I definitely hit nerves with it. I told my aunt it is an unforgivable sin to accuse someone of faking their illness. I was surprised I got that little chip in her armor, that little slip, "You are too young to be dealing with all this". Of course she will probably go back to being the monster she is, but somewhere in her brain, she knows I'm right.

I just cant understand why someone would think that we would want to fake an illness that know believes is real, if i was going to fake an illness it would be something everyone would believe for a start.

I wrote an email to my family members a few months ago as they were getting angry at me for not showing up at family functions etc. SO i told them what i had and all my abnormal tests and said to them i wasnt after their sympathy etc and i dont really want to talk about it as im dealing with it myself. Just wanted them to understand that im not ignoring them but most of the time im to unwell to visit. Although im more functional then alot of me/cfs people, after working i have nothing left and im resting when on days off so i can work again, im doing this to try and support my family, so i need my rest.

I know they dont really understand but now i have given them my answer and i dont stress about it anymore. generally they have been good although i think one of my brothers is very skeptical, but then again this is the brother i heard whinging about being sleep deprived because he only got 7 hours sleep. Im sure if he had ME he would be the biggest sook going.

Are well you get that, alot of it is out of our control, so we just have to keep soldiering on.

Carrigon, i hope u get some support from some of your family,
good luck,
cheers!!!

 

[SickOfSickness]

I told my aunt it is an unforgivable sin to accuse someone of faking their illness. I was surprised I got that little chip in her armor, that little slip, "You are too young to be dealing with all this". Of course she will probably go back to being the monster she is, but somewhere in her brain, she knows I'm right.

Agree with how horrible it is. I know what it's like. I sometimes got statements that showed understanding, and then right back to the horribly accusative stuff. So I never felt any better getting the "nice" statements. They became insulting too. Like I was being pandered to. I would just avoid those people a lot.

 

[SickOfSickness]

My Mom found a letter in the Washington Post that exploded her brain. "Chronic Fatigue is Overlooked" She called to read me the first 2 paragraphs, but not the third. I went and found it in my paper, and near the end it says: "...and what do we have? A long string of doctors, counselors, well-meaning friends and uninformed relatives telling us to cheer up."

I think she was stunned to see her efforts to cheer me up painted as delusional. She still isn't asking me any obvious, useful questions about CFS, but she's being really really nice to me.

You never know what will wake them up.

I wish this article were all over the web! I want to read it but only found a place to pay to read.

But I would think many people will discount it, since it's written by a CFS sufferer (from what I can see).

I hope she stays sympathetic and reads more!

 

[rydra_wong]

I think it will get better over time -- for instance the genetics field is here and the new doctors are being brought up with it -- the human genome has been mapped and there are many many studies proving the consequences of many of the genetic mutations involved. (There is a genetic component to CFS/ME). It will percolate down to the general population once it has percolated to most of the doctors. Maybe not soon enough to straighten out your aunt and uncle. I am thinking it will happen in our lifetimes though.

 

[Andrew]

My monster aunt went right back to being the close minded devil she is. And her sadistic husband said to me, "so you have a FEW health problems, get out there and work".

Best to stay away from toxic people.

 

[u&iraok]

Here's a story that might make you feel a slight bit better. Not that I wish bad on anyone but the universe sometimes has a way of, you know, evening things out so to speak...:

My husband gets horrible migraines and would have to call in sick. His boss would say, "It's just a headache, get in here and work!" So he would come in and throw up in the bathroom, struggling to work.

One day he came in and his boss was in the bathroom, throwing up. His boss now suffered from terrible migraines.

 

[Carrigon]

I believe it. I've seen stuff come back on people. My evil uncle said to me, "So you have a FEW health problems, go to work like everyone else." May he, too, be blessed with a FEW health problems. We'll see what's in store for him. We all know the saying, "judge not lest ye be judged".