Do pals/relatives/partners tell you it's "all in your head"?
How do you convince someone that what you're going thru is not just your imagination???!!!
It is so so so agrivating to hear people say "it's all in your head" when I complain about being dizzy, or nauseous, or in pain, etc...UM YES IT IS IN MY HEAD IT'S CALLED TMJ DISORDER...
I tell them to imagine what it feels like to be ill or in pain almost every day and tell me how long they could keep their mouth shut about not feeling well.
Is there any place online I can go to print off info and give it to them??? I am sick of being sick, and sick of having to explain myself or having people not believe me and think it's just an excuse to be lazy...
That's basically what I did. I felt like they didn't understand, so unless they ask, I usually don't talk about it very much. I do same the same thing with my family (except my husband).
I like this board for that reason. I can tell everyone here when I'm having a bad day or get information from my doctor that confuses or scares me and the people here at least understand. I usually read more than I post, but at least I don't feel quite so alone with my problems.
yes, my venting on these boards is what lead me to figure out what was wrong in the first place, and no doctor or specialist I saw even mentionned this...so these boards have been great..
and I WILL continue to post with all my questions and concerns, who better to answer them than people who are going thru this as well??
Hey you guys there is a big thread called "hHard time getting family to understand" posted by Charlene.
It is very hard getting them to understand what we are going through, since we seem normal to them. We have a physical disorder that we did not have a say in taking over our body. But when you talk to people who are not in pain, they can't even begin to grasp what you are talking about.
the worst for me is trying to explain the headaches. i don't feel that they are normal headaches that everyone else gets, but I don't have another name to call them. I do like what I believe Cheryl refers to them as a big elephant sitting on top of your head. this phrase makes a lot of sense to me.
what I have decided since the other post is stop trying to convince people of your pain. I feel it, others (the board) knows exactly what I am feeling, and I will conquer this evil presence.
It gets nerve wracking at times. Now since my jaw is locking up after many years of pain (I got more), people are finally starting to notice my pain. This shocks me. sometimes I don't know what to do, yell at them or cry. I want to yell "WHY DID IT TAKE YOU SO LONG TO BELIEVE ME?" I would cry "it is about time".
It has been 6 years since I left that ride that gave me tmj, but sometimes I feel like I am still on a roller coaster (emotional that is).
Reading Elaine's post of TMJ Reality helped me put a lot of things into perspective. (You may have seen it,
but it was several pages back) I copied the poems for myself a few months back, with no intention of anyone else reading them.
My family has always tried to be supportive, but they couldn't relate to years of pain & problems caused by what they knew of TMJ. (My husband of 26 years "has" suffered every step of the way with me)
My Mother happened to pick these poems up a few weeks later and started to cry. She wanted copies to show to my siblings and other family members. She said they were deeply touched, they all said "They didn't know."
I know you probably would like to have a Medical Interpretation or Report of the constant pain and the complications caused by this disorder. I don't think there is one out there, yet. The majority of Doctors don't have a clue and if they do, they don't put it into writing. It could possibly reflect badly on the Medical & Dental Professions, regarding all of the mistakes in treatment & surgeries and the fact that very few of them really know what they are doing.
Four years ago, ( about a year after my 6th surgery) I was very sick. I couldn't eat, I was on tons of meds, I was still in pain and I started having heart paps.
After several months and many Doctors (who found nothing) it got so bad, I went to the ER. (Middle aged woman, looking anorexic, severe heart paps). ER Diagnosis: PANIC & ANXIETY, (possibly suicidal), & I was put in the psych unit for evaluation. I tried to tell them, I was not anxious & certainly not suicidal, I was sick.
A very young, bright "Shrink" came in and talked to me about 30 minutes the next morning and it was the best thing that ever happened to me.
He told me in about 15 minutes, that I didn't have Panic Disorder or any other Emotional problems that he could see. He told me that I had a horrendous "Chronic Pain Disorder" that few understand and that I had been "SADLY" mistreated by the Medical Profession. With a few words, I immediatedly had a new perpective on my life and no longer felt like I owed the world an explanation for not being able to control or rid myself of a very real Disease, that too many Doctors dismiss. He told me I had done very well dealing with this Disease and the Doctors who cannot or will not help.
(I found out later, he sees a lot of Chronic Pain Patients, due to his uncanny ability to understand and to determine very quickly, if you are suffering emotionally, physically or both.)
I see him a couple of times a year, so he can tell me I'm OK. He helps me remember, I'm not "Nuts".
I changed Medical Doctors and found out, I had stomach problems from some of the medicine, hypotention, and a severe sodium imbalance that caused the heart palpitations. The Cure; stop the meds that were irritating my stomach and eat extra salt, to stabilize my blood pressure and keep sodium levels up. CURED!!!
I had gone to countless Specialists. How did they miss something so easily diagnosed with a couple of simple tests??? In 15 minutes, it's much easier for them to diagnose Anxiety, Drug Seeking, Hypochodria, All-in-Your-Head, and my personal favorite,
I know this probably does not help much, but I did come away from this experience with an understanding of why most of us have such a hard time with the rest of society. If the majority of Professionals we go to, don't have a clue, how could our friends, relatives, and co-workers even begin to understand.
To scprin: Holding all of this in, is not good for you. Find someone you trust and who believes in you. We all need that "someone" who understands.
And...., you can say anything you want to here, we all understand.
Prayers for a better day for all,
[This message has been edited by Cymy Sue (edited 05-02-2003).]
Again thank you all for your response...
Cymy, wow sounds absolutely horrific!!! I am glad that your family now understands how you feel and what you are going thru each day..it's VERY depressing to KNOW how awful the pain is and then have people tell you you're nuts....but checking you into a hospital?? wow, I am so sorry you had to go thru that...
I found a web page that sums up the symptoms and discusses thr fact that people don't believe us when we say how we feel, which leads to feeling even worse emotionally, which I am sure does not help the actual physical pain....I am armed with that for anyone who decides to tell me I am imagining this stuff....
I had no idea this could be an outcome of wisdom tooth extraction..but I had to get them out b/c they were starting to bother me and push my other teeth out...
I have a denitst appointment tonight to get fitted for a bite plate, and I plan on asking a TON of questions about this.....
My family didn't put me in the hospital. The "ER DOCTORS" told my husband that it was their responsibility to admit any patient that might be "possibly suicidal". My husband knew I was physically ill. He thought if a Shrink saw that I was not "Nuts", then I might actually get some Medical Help. He was right.
This experience was a good one. It changed the way I look at the world. If a Doctor or anyone for that matter, does not understand me and my "Condition", they all fall under the same category.
I usually call it "The Stupid Doctor Disease".
It could apply to others, if need be.
We are not "Inferior" or "Mental Cases". We have a very real and disabling Disease/Disorder.
If others, including Care Providers choose to ignore this or not educate themselves regarding TMJD, they go on "THE LIST".
To quote Mel, "It works for me".