Aa
trying NOT to talk and/or mention my sx.
I don't know about any of you, but I have been working on not talking about anything regarding my neuro issues for at least the past 3 months. I work at ignoring my own symptoms while being careful not to: wince, fall, tip-over, say "Oh God that hurts, "I can't see the floor", "I can't tell how far away you are" or even discuss doctor appointments or tests. I take my medicine as quietly as I can and work around the house.
Why"
I sometimes think even my family thinks I am nuts. Sometimes I think that I am nuts too. I feel embarrassed and stupid that I should be able to handle everything better. Sometimes a family member says "why haven't you done ____yet?", to which I respond: "I do as much as I can but I haven't been able to get that done yet. I feel like other family members would be a better patient than I.
It's not that my tests come back negative either, it's that they haven't yet been conclusive.
So, like all of you I am here in limboland not knowing where I fit in. I want to know what this is so I can fight it with the help of a doctor(s).
I just want to stop talking about it or even thinking about it. How do you deal with this stuff? What do you think"
Thanks!
Why"
I sometimes think even my family thinks I am nuts. Sometimes I think that I am nuts too. I feel embarrassed and stupid that I should be able to handle everything better. Sometimes a family member says "why haven't you done ____yet?", to which I respond: "I do as much as I can but I haven't been able to get that done yet. I feel like other family members would be a better patient than I.
It's not that my tests come back negative either, it's that they haven't yet been conclusive.
So, like all of you I am here in limboland not knowing where I fit in. I want to know what this is so I can fight it with the help of a doctor(s).
I just want to stop talking about it or even thinking about it. How do you deal with this stuff? What do you think"
Thanks!
There are certainly two sides to this.
One the one hand, your body is sending you constant signals that something is wrong! That's evolution in action, as ignoring our health can be deadly. It is therefore natural in my opinion to be a bit preoccupied when a yet unknown medical condition is turning your life upside down.
On the other hand, there are social boundaries and limitations to any relationship. While I was undiagnosed, I reached out to friends, describing to them in what I now realize to be too great detail, about my situation, symptoms, and doctor visits. Some of my better friends addressed this with me, and actually that is what prompted me to seek online support. And it made sense to me: Who better to share this experience and frustration with than others who understand exactly?
I also took up journaling and that was also helpful in keeping an organized perspective on my situation, and in sparing those close to me.
The sad truth is that when people ask "How are you?" they are often only willing to accept the obligatory "Fine, thanks for asking" or "I'm good, and you?" level of response. More than that can make people uncomfortable, and it's better to play it safe than to create an awkward situation.
I was deeply saddened that certain close friends turned their back on me, but overall that was balanced against the support I found from unexpected sources, both in my personal life and online.
So be kind to yourself and accept that given your condition, your mind is required to keep nagging at you to fix the problem. Doing your best to channel those worries into beneficial activities like support group participation, writing, or even art, will hopefully make an uncomfortable situation a tiny bit more bearable.
One the one hand, your body is sending you constant signals that something is wrong! That's evolution in action, as ignoring our health can be deadly. It is therefore natural in my opinion to be a bit preoccupied when a yet unknown medical condition is turning your life upside down.
On the other hand, there are social boundaries and limitations to any relationship. While I was undiagnosed, I reached out to friends, describing to them in what I now realize to be too great detail, about my situation, symptoms, and doctor visits. Some of my better friends addressed this with me, and actually that is what prompted me to seek online support. And it made sense to me: Who better to share this experience and frustration with than others who understand exactly?
I also took up journaling and that was also helpful in keeping an organized perspective on my situation, and in sparing those close to me.
The sad truth is that when people ask "How are you?" they are often only willing to accept the obligatory "Fine, thanks for asking" or "I'm good, and you?" level of response. More than that can make people uncomfortable, and it's better to play it safe than to create an awkward situation.
I was deeply saddened that certain close friends turned their back on me, but overall that was balanced against the support I found from unexpected sources, both in my personal life and online.
So be kind to yourself and accept that given your condition, your mind is required to keep nagging at you to fix the problem. Doing your best to channel those worries into beneficial activities like support group participation, writing, or even art, will hopefully make an uncomfortable situation a tiny bit more bearable.
Thank you sor responding to my question and for your encouragement. I will start journaling like you suggested as well as tracking symptoms and just organizing and educating myself about all of this. I was also thinking that getting more involved in the needs of others always helps too.
It really is difficult to know how much to share with others, despite the fact that I often feel that I want to share more. I think I want some type of reassurance from friends and family-----but like you said they can't always deal with it.
It has been a while since I worked with my art----that's a really good idea.
take care
It really is difficult to know how much to share with others, despite the fact that I often feel that I want to share more. I think I want some type of reassurance from friends and family-----but like you said they can't always deal with it.
It has been a while since I worked with my art----that's a really good idea.
take care
I try to also not talk about my issues. At first, it consumed me. As time has moved on I have figured that eventually everything will come to light. However, the friends that turned their backs on me I have dismissed from my life. I hope they never have to go through this but should they have to they need not look to me for help. Who needs enemies with friends like that? I realize I dumped a lot on them but they have no clue how much i did not share. They have no idea how scary it is to be so sick and noone can tell you why. I hope they never have to know. I have found support here that fits my needs better and now I try to not let my illness consume me. Take care! Hugs from kentucky!
Yeah, I have been dealing with this too. At first I was talking about everything, but as time passes and you don't have a diagnosis people start thinking you're nuts. At this point I'm mostly just biting my tongue and not saying anything to anyone. It *****.
Wonko, you mentioned support groups but I don't know how you can go to a support group when you have no diagnosis. Are there groups for people like that? "Something could be wrong with you but maybe not and who knows what it is Anonymous".. maybe I should start one.
I don't know, for the moment I am just shutting my trap, keeping note of symptoms as they come, trying to get into a psychiatrist appointment, and hoping that things either go away or get so much worse that docs can no longer deny something is going on.
Wonko, you mentioned support groups but I don't know how you can go to a support group when you have no diagnosis. Are there groups for people like that? "Something could be wrong with you but maybe not and who knows what it is Anonymous".. maybe I should start one.
I don't know, for the moment I am just shutting my trap, keeping note of symptoms as they come, trying to get into a psychiatrist appointment, and hoping that things either go away or get so much worse that docs can no longer deny something is going on.
Hello! I have been having neurological symptoms for about 7 years. Mine started off as severe vertigo. It lasted for about 3 months then just slowly got better. The vertigo did not go away but it slowly faded into what I call"spells". In April of 2009 my life changed. My legs just gave out on me. They were heavy and tingly. I blew it off as stress until I had symptoms that I could no longer ignore. I had stabbing eye pain. That turned out to be Uveitis. I was worked up for MS(supposedly negative) and many other auto immune issues. After many months of struggling to get a firm dx, I decided to break away for awhile and just tried to enjoy life. I am now entering a new phase in my life and decided to begin my search again. I have new symptoms now and it is looking a lot less like MS and more like some auto immune disease. I sure feel for you. I read your posts on the MS forum and it sounds as if you have really been through the ringer. I can offer some advice. If you feel that your doctors are blowing you off, find new ones. DO NOT GIVE UP!! Take a mental break if needed but never stop looking for a dx. You will find a doctor to listen to you eventually. I found a PCP that takes me serious and has been a a Godsend to me. Have you seen a rheumatologist? If not, I would suggest maybe going that route. Again, this post is off subject but i just wanted to respond to you. Take care and hang in there!!
Hi Red Flame
oh my goodness, yes! How difficult it is to live with undx'd and debilitating sx and yet not be able to really talk about them to family and freinds or to feel you can't.
Like everyone else who's posted here, I've had the same experience with people. Only last night a friend finally realised that what I've been saying for 5yrs is actually REAL! This is because a workmate of hers is also beginning to go through a very similar experience to mine. My friend realised that I'm not alone and not nutty!
But it's uncomfortable to watch her sort of embarrassment.
Like you, dee, I've dismissed doubting and callous friends. We really can do without these types. At least now I know the friends I have are really my friends.
And for everyone who ever thought they were imagining sx or if anyone is saying you're imagining sx, please do read http://www.medhelp.org/health_pages/Multiple%20Sclerosis/So-they-think-youve-got-conversion-disorder/show/1137?cid=36 ;(and part 2 as well).
hugs
samxx
oh my goodness, yes! How difficult it is to live with undx'd and debilitating sx and yet not be able to really talk about them to family and freinds or to feel you can't.
Like everyone else who's posted here, I've had the same experience with people. Only last night a friend finally realised that what I've been saying for 5yrs is actually REAL! This is because a workmate of hers is also beginning to go through a very similar experience to mine. My friend realised that I'm not alone and not nutty!
But it's uncomfortable to watch her sort of embarrassment.
Like you, dee, I've dismissed doubting and callous friends. We really can do without these types. At least now I know the friends I have are really my friends.
And for everyone who ever thought they were imagining sx or if anyone is saying you're imagining sx, please do read http://www.medhelp.org/health_pages/Multiple%20Sclerosis/So-they-think-youve-got-conversion-disorder/show/1137?cid=36 ;(and part 2 as well).
hugs
samxx
I understand you all entirely , I have known most of my life that I have not been normal, I have been tagged as having an “undiagnosed Neurological Illness”for 16 years , I am now 57 & have gradually got weaker, I have struggled all these years trying to appear normal, I cook for my husband, clean & generally run the house, simple tasks such as chopping veg actually cause my thumb joints to feel as if they are detached, but I carry on, I am not a martyr but neither will I be a moaner!
I am finally changing my attitude, my mother is nearly 90 & expects me to run around after her just because it is my duty as a daughter & the fact that I am 57 yrs, I am sick of her telling me what her friends daughters do for there mothers, maybe they do, but they are normal. I have now opened up medical investigations again & this time not kept it a secrete , peoples reactions are mixed , most had no idea what I suffer, some can’t understand that I am not more concerned about the possible diagnoses of Marfans, but to me it makes little difference, I am not normal & that is that, it’s the day to day struggle I have to contend with not a name. Sorry I think I have just turned into a moaner!!
Thankyou as always for this place in my life.
I am finally changing my attitude, my mother is nearly 90 & expects me to run around after her just because it is my duty as a daughter & the fact that I am 57 yrs, I am sick of her telling me what her friends daughters do for there mothers, maybe they do, but they are normal. I have now opened up medical investigations again & this time not kept it a secrete , peoples reactions are mixed , most had no idea what I suffer, some can’t understand that I am not more concerned about the possible diagnoses of Marfans, but to me it makes little difference, I am not normal & that is that, it’s the day to day struggle I have to contend with not a name. Sorry I think I have just turned into a moaner!!
Thankyou as always for this place in my life.
Hey Ticker! Yes it is hard to keep it a secret and i do not feel that we should have to. It is not our failure it is a failure of our medical teams. I have told everyone that I know,"One day these doctors will find out what is wrong with me and at that time I do not want sympathy because when I really needed you you did not believe me." It took my husband 4 months to really believe that i was sick. He kept telling me to suck it up. When I first got sick last year, it took me almost 8 weeks before I told anyone how bad I felt and by that time I could no longer hide it. My mom took one look at me and KNEW that I was really sick but someone that I lived with thought I was making it up? Please. I have not gained anything out of this. As a matter of fact I have lost a lot. Please everyone do not give up on finding answers. The more of us that are persistent the more doctors will have to believe us. Take care!
Hey, this is really a great thread. So many of us feeling and experiencing the same things. We really need to stand together and post our symptoms and any sort of lonely type feelings we may have.
I think all of this leads to feelings of separation from the people we need the most.
Let's support each other. When we each get diagnosed--we will have a party online.
Perhaps our Vindication Party!!
I think all of this leads to feelings of separation from the people we need the most.
Let's support each other. When we each get diagnosed--we will have a party online.
Perhaps our Vindication Party!!
"I think all of this leads to feelings of separation from the people we need the most."
It sure does. Of all the people in the world the one that I thought most would support me and try to understand is my husband and apparently I was wrong. My marriage is falling apart, my life is upside down, and I feel inadequate these days. Every chance he gets he throws in my face what i could be doing instead of sitting around being sick. First off, I do not sit around being sick. I do a lot more than my body can handle most days. Granted, it is less than what i used to do but I still try. I did not ask for this. I have not gained anything from it and would not wish it on my worst enemy. It is a shame that we have to justify ourselves and our illnesses everyday because doctors cannot find out what it is. Sometimes I think it would be easier to just pack up and leave and never look back. One day, he will need me and providing i am still around I guarantee I will not treat him the way he has me. That is the difference in him and I. I care he doesn't. He is selfish and only looks at how my illness has affected him. He fails to see that it has affected everyone in my life, and most of all, me. Sorry for pity partying it is just one of those days!! Take care!
It sure does. Of all the people in the world the one that I thought most would support me and try to understand is my husband and apparently I was wrong. My marriage is falling apart, my life is upside down, and I feel inadequate these days. Every chance he gets he throws in my face what i could be doing instead of sitting around being sick. First off, I do not sit around being sick. I do a lot more than my body can handle most days. Granted, it is less than what i used to do but I still try. I did not ask for this. I have not gained anything from it and would not wish it on my worst enemy. It is a shame that we have to justify ourselves and our illnesses everyday because doctors cannot find out what it is. Sometimes I think it would be easier to just pack up and leave and never look back. One day, he will need me and providing i am still around I guarantee I will not treat him the way he has me. That is the difference in him and I. I care he doesn't. He is selfish and only looks at how my illness has affected him. He fails to see that it has affected everyone in my life, and most of all, me. Sorry for pity partying it is just one of those days!! Take care!
You bring a tear to my eye, dear lady.
You do not deserve this kind of treatment from your partner!
I hope he will see the light and realise you need his support, not his anger. If he needs to be angry, he needs to be angry at the fact the dr's can't dx you, not at you.
Please know that you are not inadequate, you are unwell.
I really hope you and your husband can become a team, that's what needed in this instance, the two of you to come together and figure out what's happenning to you.
Be well. And know we care.
Mike
You do not deserve this kind of treatment from your partner!
I hope he will see the light and realise you need his support, not his anger. If he needs to be angry, he needs to be angry at the fact the dr's can't dx you, not at you.
Please know that you are not inadequate, you are unwell.
I really hope you and your husband can become a team, that's what needed in this instance, the two of you to come together and figure out what's happenning to you.
Be well. And know we care.
Mike
Hey all. I'm one of those who has also stopped talking about my symptoms to the "real" people in my life. If I speak to my parents, they just brush it off and say that it's stress. I stopped telling my friends about it ages ago. First they were very intrigued by it and I kinda became the circus freak that was on display. Then I became the laughing stock as they started centring their jokes around me. As time passed though, I think they realised that I'm actually unwell because I'd blow them off for sleep and they also saw that I started to struggle with my speech. Now we've kinda reached this mutual agreement that no one mentions it. So now I just grit my teeth my teeth and try be as normal around them as possible. The only people that I now talk to about this my "virtual" friends and I have one person left in the "real" world that I feel comfortable to chat to about it all (besides my neuros, they are great) and that one person is one of my lecturers. He's been really great through this all. Like last year after I had a 2 week hospital stay, he sat with me for 5 hours to go over all the work that I missed while all the other lecturers said I must just go over it by myself, that's most probably why I'm repeating the year. He's always willing to listen and he gives great advice as well. It's amazing how solace while the people that I'm supposed to feel close to have shunned me. I'm in that place now where when people ask me how I am, I just use the obligatory "I'm good thanks and you?" I can't remember how I stumbled across this site but it really has been a heaven send for me. Take care everyone
I am so sorry to read that many have gotten the brush-off from those we depend on most. There are a lot of difficult-to-swallow life situations that come along with getting sick, and I think being let down by friends and family is one of the toughest. I tired to move past this long enough ago that my feelings are less raw, but this reminds me of a lot of hurt.
I also want to add that getting a diagnosis of any kind does not necessarily fix this problem. There are a number of illnesses for which most of the population has little to no knowledge or understanding. And depending on your situation, you may not want to share the details of your health with co-workers. So no matter what your status of dx'ed or not, and with what, if you chose to keep a lid on details you may never feel validated.
My dx is chronic Lyme disease, which most doctors can't agree on if it even exists, how to test/diagnose it, or if/how to treat it. I had to get a referral to a special doctor who would even take my case and treat it.
Most of the people I told the details to had little to no sympathy, since the popular knowledge about Lyme is that it's "Hard to get, easy to treat." The truth is that I had to get a lot worse before I started to get better, and that at 1.5 years I'm still in treatment. But almost no one understands the implications of my dx/tx. They don't "get" why I am still sick, or why I have some days when I seem ok but other days when I'm still laid up.
At work, I kept my situation under wraps to protect my career. For a year I worked part time, and with poor consistency. Since I didn't disclose my situation, I had to live with people assuming that I was lazy or weird or whatever they thought.
I would still travel to large meetings/conferences as much as I could, where I would give presentations to audiences that had no idea that I was sick, working part time, and delivering my talk through tingling, buzzing, burning, aching, and exhausting fatigue. It was/is like fighting with one hand behind my back, but only I know.
Further complicating my situation was that I was working a term position, and didn't have a permanent job. So yup, I had to go on the job market at a point in my treatment when I still couldn't work full time.
Thankfully, I am over time making improvements and I do work full time now, and I have secured a permanent position to start later this summer. But it is still a big struggle for me to get on with my life. I use sick leave as fast as I earn it, which of course hurts how well I look. I know I can't keep up with a healthy person my age, and worry about comparison. Often, I'm so exhausted that I go to bed immediately after work.
I miss out on doing so many "normal" things that I feel resentful at times, while other times I realize how lucky I am to be slowly but surely getting my life back. But it is a very personal battle for me, and yes, when people ask how I'm doing, I just smile and say "Good, thanks for asking."
Thank goodness I can come online and release some of this stress, and I'm also lucky to have very few but very wonderful people in my life.
Best of luck to all.
Hi all
It's made my heart so heavy to read your experiences. I could cry for us all.
Only the other day I was talking about this awful treatment we get with a real life friend who has serious chronic medical issues - and who routinely gets this unkind, brush-off sort of behaviour, even from doctors.
I can only think that it comes from something very deep in human nature, seeing that it's such a widespread reaction. It's not a cultural thing I mean.
As I've said here before, I've experienced it in shedloads; my partner left, my kids didn't understand and are still secretly resentful that their mum is not their 'proper' mum now. And the doctors...well...their mistakes through callousness, prejudices and just-not-listening are astounding. It's made my difficulties (in every sphere: health, social, economic, emotions) far worse than they need have been.
In fact, I have just been dx'd with complex (i.e. caused over time) post traumatic stress disorder because of it. The psychologist I've recently been seeing actually gets it...she gets exactly what's happened here and how the chronic failings of the so-called health service have actually caused this.
It's an obscene indictment of humanity, isn't it? Dismissing real illness actually creates more illness and disability. I've come to a point where I just don't understand most human beings any more. I mean, WHY do doctors go into medicine if they don't want to dx and treat people? Why do allied professionals go into e.g. nursing, psychotherapy, social work, etc if they don't want to actually pay attention to the needs of their patients or service users?
Meanwhile, most of us with chronic neurological conditions struggle on and on with little understanding, little support and even derision from many around us. This is exactly why Maria, bless her, started this board: so that others like her could find support and care and understanding.
I echo the sentiments of all - we need to keep on pushing for proper diagnoses and to support each other to do so. And yayaay!!! then we need to have Diagnosis Parties as and when each of us gets diagnosed eventually!
biggest hugs to all who are suffering from the ignorance and dismissiveness of their doctors or friends or families...
samxxxx
It's made my heart so heavy to read your experiences. I could cry for us all.
Only the other day I was talking about this awful treatment we get with a real life friend who has serious chronic medical issues - and who routinely gets this unkind, brush-off sort of behaviour, even from doctors.
I can only think that it comes from something very deep in human nature, seeing that it's such a widespread reaction. It's not a cultural thing I mean.
As I've said here before, I've experienced it in shedloads; my partner left, my kids didn't understand and are still secretly resentful that their mum is not their 'proper' mum now. And the doctors...well...their mistakes through callousness, prejudices and just-not-listening are astounding. It's made my difficulties (in every sphere: health, social, economic, emotions) far worse than they need have been.
In fact, I have just been dx'd with complex (i.e. caused over time) post traumatic stress disorder because of it. The psychologist I've recently been seeing actually gets it...she gets exactly what's happened here and how the chronic failings of the so-called health service have actually caused this.
It's an obscene indictment of humanity, isn't it? Dismissing real illness actually creates more illness and disability. I've come to a point where I just don't understand most human beings any more. I mean, WHY do doctors go into medicine if they don't want to dx and treat people? Why do allied professionals go into e.g. nursing, psychotherapy, social work, etc if they don't want to actually pay attention to the needs of their patients or service users?
Meanwhile, most of us with chronic neurological conditions struggle on and on with little understanding, little support and even derision from many around us. This is exactly why Maria, bless her, started this board: so that others like her could find support and care and understanding.
I echo the sentiments of all - we need to keep on pushing for proper diagnoses and to support each other to do so. And yayaay!!! then we need to have Diagnosis Parties as and when each of us gets diagnosed eventually!
biggest hugs to all who are suffering from the ignorance and dismissiveness of their doctors or friends or families...
samxxxx
After reading your thread I would have to say that you are so right when you say that not being properly diagnosed causes other illnesses and disabilities. I never suffered from anxiety or depression until i became ill. Now I have both. When the doctors ask me I am hesitant to tell them that I have anxiety because I am afraid that they will blame all of my symptoms on anxiety or depression when that is not the case. My illness and the lack of doctors taking me seriously has created anxiety in me and the fact that I have no life and what life I do have is falling apart is causing depression. Unless someone has dealt with these issues they have no clue how to react to it. As far as why do doctors and nurses enter in to the medical field when they have no desire to help people like us is:
1) They are in the practice for the wrong reason.
2) They do not want to offer the time that it takes to diagnose hard to diagnose cases. They are looking for horses in the field of horses and not that zebra.
3) They assume way too much and do not really have the facts.
4) They DO NOT LISTEN TO US!
The list goes on and on. I have one doctor that listens and I feel truly cares for me but even she has not been that great of a help to me but at least she believes me. I wish we all could get the answers that we deserve. It is not fair to us or our families to have to be subjected to this. I have even tried to contact doctors from Mystery Diagnosis but I have had no luck locating them. I know that sounds extreme but desperate times calls for desperate measures...lol...Take care people~
Dawn
1) They are in the practice for the wrong reason.
2) They do not want to offer the time that it takes to diagnose hard to diagnose cases. They are looking for horses in the field of horses and not that zebra.
3) They assume way too much and do not really have the facts.
4) They DO NOT LISTEN TO US!
The list goes on and on. I have one doctor that listens and I feel truly cares for me but even she has not been that great of a help to me but at least she believes me. I wish we all could get the answers that we deserve. It is not fair to us or our families to have to be subjected to this. I have even tried to contact doctors from Mystery Diagnosis but I have had no luck locating them. I know that sounds extreme but desperate times calls for desperate measures...lol...Take care people~
Dawn
It is a sad day indeed when I see so many people online that are in this situation of not getting answers and/or help from the medical world. Unfortunately, more and more people are going into medicine/healthcare for the $$, prestige, misc. reasons that have nothing to do with HELPING PEOPLE. If you cannot be diagnosed in 20-30 minutes, then..........well you all know what happens. The situation is turning into make it quick, easy and lucrative for alot of physicians. There are still some good ones, but, VERY DIFFICULT to find. I have worked as a nurse for 12-13 years, so I have seen the good, bad and ungly from other so-called "nurses" and "physicians" that could care less about their patients and more about the $$$, titles, etc. They love the status, but not helping others. OR they are SO incompetent they should be NO where near LIVE people. At one time, I got fed up seeing all this crap and wanted to walk away from it, but I thought who will be there to fight for these patients?
Then, there are those people who were downsized from their jobs and float into the medical field because they heard it was "stable" and a good way to make LOTS of "$$$$$." ;NOT a GOOD idea. I find that they make the WORST medical workers because it is NOT "in their blood" to do this kind of work; they were forced into the medical world.
On the other hand, patients present with symptoms sometimes that have NEVER been seen or heard of because it is just something so truly rare. I had a friend who fit this category; only 10 people in the WORLD had this condition. She died last December after living with it for 24 years of her life. She was only 43 when she died.
To make a long story short, I believe it is a combination of things creating this world of "limbo" for alot of people. And yes, as a nurse, I have experieced this "limbo" situation myself.
Then, there are those people who were downsized from their jobs and float into the medical field because they heard it was "stable" and a good way to make LOTS of "$$$$$." ;NOT a GOOD idea. I find that they make the WORST medical workers because it is NOT "in their blood" to do this kind of work; they were forced into the medical world.
On the other hand, patients present with symptoms sometimes that have NEVER been seen or heard of because it is just something so truly rare. I had a friend who fit this category; only 10 people in the WORLD had this condition. She died last December after living with it for 24 years of her life. She was only 43 when she died.
To make a long story short, I believe it is a combination of things creating this world of "limbo" for alot of people. And yes, as a nurse, I have experieced this "limbo" situation myself.
Hello and welcome Londres
I'm sooo sad to read about your friend. I wish the medical fraternity would learn that there *are* more hard to dx diseases than they're taught.
I think you and Dee are spot on: it's a combination of things which add up to some very poor service for far too many of us.
And, Red Flame....I'm very sorry that we've gone off at a bit of a tangent on your post, but you've quite rightly stirred a hornets' nest here! ;-)
bestest
sammxxx
I'm sooo sad to read about your friend. I wish the medical fraternity would learn that there *are* more hard to dx diseases than they're taught.
I think you and Dee are spot on: it's a combination of things which add up to some very poor service for far too many of us.
And, Red Flame....I'm very sorry that we've gone off at a bit of a tangent on your post, but you've quite rightly stirred a hornets' nest here! ;-)
bestest
sammxxx
Merci/Thanks to all for your welcomes.
I think u hit the nail on the head...so sorry about your friend. it is a shame that we all must make our doctors to believe us. They should always believe their patients until they have a reason not to. I think most of it is a money thing though. People think they can make a lot of money in the medical field and do not think of the fact that, we as patients, put trust in them, basically we put our lives in their hands and that is a heavy load for anyone. There are good doctors but far too many bad ones. Take care all!
I am so glad that we have been able to post our frustrations and share similar horror stories.
I too believe that the 'trauma' we are going through each day is another diagnosis of it's own. I believe that the medical profession is incredibly misogynistic. Illnesses that are predominantly women are often 'brushed under the rug', minimized, or just plain ignored. Then there are diseases that are predominantly women but are said to be more severe when the patient is male. geesh!!!
There was a case a few years ago when a young woman went to the emergency room at Cornell U. in New York. She 'claimed' to be suffering from 'neurological type' symptoms including muscular twitching and 'jerks'. The doctors basically blew her off but allowed her to remain the in the emergency unit, even restraining her becuase of her 'behavior'. The docs assumed she was mentally ill and ignored her. She died of Serotonin Syndrome while in restraints.
My point is that if you even show an inkling of having 'depression' or 'anxiety' issues they seem to immediately put up a wall. The first question I get is "where do you get your Effexor?" I think I should start telling them I get it from Walgreens.
And to those of you that have lost friends and partners I am soooo sorry.
Someday we will have our definitive diagnoses. I think that each of us should fax copies of that diagnosis to every doc that would not help us. Sadly, that won't heal the bruises we already have from the medical field.
I am, really ranting aren't I-----I just am so angry and have nowhere else to rant.
Thanks for letting me 'go off the deep end'!! :-)
lois
I too believe that the 'trauma' we are going through each day is another diagnosis of it's own. I believe that the medical profession is incredibly misogynistic. Illnesses that are predominantly women are often 'brushed under the rug', minimized, or just plain ignored. Then there are diseases that are predominantly women but are said to be more severe when the patient is male. geesh!!!
There was a case a few years ago when a young woman went to the emergency room at Cornell U. in New York. She 'claimed' to be suffering from 'neurological type' symptoms including muscular twitching and 'jerks'. The doctors basically blew her off but allowed her to remain the in the emergency unit, even restraining her becuase of her 'behavior'. The docs assumed she was mentally ill and ignored her. She died of Serotonin Syndrome while in restraints.
My point is that if you even show an inkling of having 'depression' or 'anxiety' issues they seem to immediately put up a wall. The first question I get is "where do you get your Effexor?" I think I should start telling them I get it from Walgreens.
And to those of you that have lost friends and partners I am soooo sorry.
Someday we will have our definitive diagnoses. I think that each of us should fax copies of that diagnosis to every doc that would not help us. Sadly, that won't heal the bruises we already have from the medical field.
I am, really ranting aren't I-----I just am so angry and have nowhere else to rant.
Thanks for letting me 'go off the deep end'!! :-)
lois
Red Flame...that didn't read like a rant, more like an accurate assessment of the situation many of us face. I agree about misogynistic docs. BUT, I do know two men who have had the same treatment.
Having said that, the two men I'm closest to have had stunning medical attention this last year (in one case the ER docs called a top national consultant away from a dinner party 200miles away at a weekend - for something that was actually far more minor than anything I would go to the ER for). I know if I consulted a doc about the same sort of things I would be dismissed and ignored and diminished.
You're right - this IS real trauma. QED my dx with complex PTSD. There's a tacit understanding that the way I've been dismissed has contributed to this condition.
I expect a formal neuro dx sometime this summer - when i can summon up the courage to see the neuro. I too have that plan to send copies to each of the so-called doctors who have been so vile to me, together with a request for an apology!
But really, if I never had to meet a doctor ever again it would be too soon.
>>>uh ho...sounds like I'm on a rant now!
samxx
Having said that, the two men I'm closest to have had stunning medical attention this last year (in one case the ER docs called a top national consultant away from a dinner party 200miles away at a weekend - for something that was actually far more minor than anything I would go to the ER for). I know if I consulted a doc about the same sort of things I would be dismissed and ignored and diminished.
You're right - this IS real trauma. QED my dx with complex PTSD. There's a tacit understanding that the way I've been dismissed has contributed to this condition.
I expect a formal neuro dx sometime this summer - when i can summon up the courage to see the neuro. I too have that plan to send copies to each of the so-called doctors who have been so vile to me, together with a request for an apology!
But really, if I never had to meet a doctor ever again it would be too soon.
>>>uh ho...sounds like I'm on a rant now!
samxx
You are not ranting at all, I think it helps all of us to listen to all of our stories. Our stories are so powerful----and I think that together we become assertive and empowered.
We need to see each other through this, I'm not sure how but we can stick together in all this pain that we are in. I have PTSD too (from a different source), all of this trauma has worsened my symptoms as well as my depression. Actually, talking about the anger lessens the depression.
Lets just keep this up---we will make it somehow
We need to see each other through this, I'm not sure how but we can stick together in all this pain that we are in. I have PTSD too (from a different source), all of this trauma has worsened my symptoms as well as my depression. Actually, talking about the anger lessens the depression.
Lets just keep this up---we will make it somehow
Well guys I have read your posts with interest.
Dee let me tell you a story about husbands lol.
I have been sick nearly 4 years now and in the main I have worked hard to keep a home and my sanity and I try in the main not to moan about my pain and illness there is only so much of that cr*p that even I can stand.
Anyway my hubby fell 2 weeks ago badly he doesnt know why. Scary.
The up shot is he has broken a rib which is very painful so he is on Tramadol for the pain.
First off I have been in pain for over 3 years somedays so bad I wish god would take me from this earth just to get relief, but I have never resorted to pain killers, as I firmly believe once you start them they do more harm to your system then anything. But thats my way I respect others if they need to take them for the pain.
So he is off work and cant do his hobby which is fixing his classic car.
I found him sat by his computer last week CRYING....... I said to him why are you crying? He said to me because I cant do anything I like doing and I have to just sit about for the next 6 weeks at home getting bored..............................
I said to him........ WELL WELCOME TO MY WORLD....
1. At least you will get better.
2. Stop feeling sorry for yourself.
3. Concentrate on the things you can do.....
We had a long chat and I encouraged him to take up his CB radio again, get his radio licence renewed, and also to go fishing which we both used to enjoy.
I said to him perhaps if you had given me a bit more support I would not have plunged so deep into depression.
He said after just 2 weeks he cant understand how i have coped so well.
In the last 4 days we have got on the best EVER for a long time, as he has had a real wake up call.
I hope you give this message to your husband to read.
LIFE can change in a heart beat and we need each other. IF one of us is sick we need to support that person for as long as it takes. IF we both end up sick together then we need to support each other through it THAT IS WHY WE GOT MARRIED IN THE FIRST PLACE. To love each other in sickness and in health......There are no guarantees in this life that is for sure.
Dee let me tell you a story about husbands lol.
I have been sick nearly 4 years now and in the main I have worked hard to keep a home and my sanity and I try in the main not to moan about my pain and illness there is only so much of that cr*p that even I can stand.
Anyway my hubby fell 2 weeks ago badly he doesnt know why. Scary.
The up shot is he has broken a rib which is very painful so he is on Tramadol for the pain.
First off I have been in pain for over 3 years somedays so bad I wish god would take me from this earth just to get relief, but I have never resorted to pain killers, as I firmly believe once you start them they do more harm to your system then anything. But thats my way I respect others if they need to take them for the pain.
So he is off work and cant do his hobby which is fixing his classic car.
I found him sat by his computer last week CRYING....... I said to him why are you crying? He said to me because I cant do anything I like doing and I have to just sit about for the next 6 weeks at home getting bored..............................
I said to him........ WELL WELCOME TO MY WORLD....
1. At least you will get better.
2. Stop feeling sorry for yourself.
3. Concentrate on the things you can do.....
We had a long chat and I encouraged him to take up his CB radio again, get his radio licence renewed, and also to go fishing which we both used to enjoy.
I said to him perhaps if you had given me a bit more support I would not have plunged so deep into depression.
He said after just 2 weeks he cant understand how i have coped so well.
In the last 4 days we have got on the best EVER for a long time, as he has had a real wake up call.
I hope you give this message to your husband to read.
LIFE can change in a heart beat and we need each other. IF one of us is sick we need to support that person for as long as it takes. IF we both end up sick together then we need to support each other through it THAT IS WHY WE GOT MARRIED IN THE FIRST PLACE. To love each other in sickness and in health......There are no guarantees in this life that is for sure.
I just loved your post. I tell my family all the time you do not know what life will bring and must be willing to live with what you cannot change and not allow it to break you. The difficulties of life are the true test of love, compassion and character.
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