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TMJ Disorder -TemporoMandibular Joint Message Board
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Old 08-02-2009, 01:11 PM   #1
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Why is it so hard to get people to understand tmj?

Hey,

Whenever im at work or explaining it to anyone, no one gets it. Im very frustrated. I try to tell people at work how i cant do certain things because of TMJ and they think im nuts. I think they think i made it up to get out of work. Whenever i tell them im in pain they go, "still?" like this is an overnight thing. do u guys think they will ever recognize TMJ and start having commercials for it like they do every other disorder? that would be great. Hopefully someone starts a TMJ foundation or soemthing to aid research. sorry for the rant.. Im just venting
God bless.. Mandy

 
Old 08-02-2009, 03:15 PM   #2
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Re: Why is it so hard to get people to understand tmj?

I think it's difficult for people to understand certain things such as TMJD if it's not something they've persoanlly experienced themselves. Over the years I've had the same frustrations with my anxiety disorder. Anxiety over certain things I know can be totally irrational, but despite my knowing how irrational my feelings are, I simply can not face certain things because the feelings are too strong. I've learned to accept that not everyone can appreciate my anxiety disorder and I'm OK with that. Now that my TMJD symptoms are worsening I am having to learn to accept that not everyone appreciates how I am feeling. I find it easier to suffer in silence somtimes. It's rotten I know but I do think that people at work need to be made aware of what your limits are, it's not fair on you to have to suffer more than you already do to compensate for their lack of understanding of your disorder, although it's not visible, like a broken bandaged leg, TMJD is very real!

I agree that more awareness of TMJD needs to raised, but it's difficult when not even all dr's or dentists understand it's full complexity and array of symptoms.

Sending you a virtual hug (((Mandy))) you're not alone, I'm sure most of us on this forum can relate to how you're feeling.

 
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Old 08-02-2009, 09:28 PM   #3
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Re: Why is it so hard to get people to understand tmj?

Try getting approved for disability - then you will see how widespread the lack of understanding really is. Luckily for me - if you can call it that - my facial spasms are very pronounced and visible - but even then I had to explain why the spasms prevented me from working - as if severe pain alone is not enough. In all fairness to "them" - I never imagined tmj to be as horrible as others had described it when I was "normal" either - even now, living with it, words alone just can't describe how horrible and incapacitating it can be.

There is a nat'l tmj organization btw - if you are not registered you may want to join - its free although it does accept donations from members. They send out a monthly news letter about advancements in treatments, hold nat'l conferences with both members and specialists and lobby state and fed govs for more funding for research and mandatory health insurance coverage.

Last edited by Thelma-Louise; 08-02-2009 at 09:29 PM.

 
Old 08-05-2009, 08:04 AM   #4
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Re: Why is it so hard to get people to understand tmj?

I totally agree with what you are saying about people not getting it. I truly believe us as humans do not really understand what you are going through whether it be tmj, diabetes, or whatever-If you do not experience it, there is really NO understanding and not very much compassion either. The people at work should'nt be so rude, and say things like that, but again they dont understand and we really cant blame people for not knowing, what else are they really supposed to say?

 
Old 08-05-2009, 09:54 AM   #5
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Re: Why is it so hard to get people to understand tmj?

I had to laugh a couple weeks ago when my friend said she could relate to the tmj pain because she had gotten a popcorn kernel stuck in her tooth for over a week, and she was in a lot of pain over that. Are you kidding me? was what I was saying in my head, but I just politely nodded and said, "yes, that must have been horrible.." Even my husband doesn't really understand the pain associated with it, and I have to remind him that sometimes it's so bad it makes you want to vomit, and I can't get everyday chores done like how I would want to. It's terrible..

 
Old 08-05-2009, 01:39 PM   #6
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Re: Why is it so hard to get people to understand tmj?

I so agree with you! I have gotten so many dumb (I mean uneducated) comments...hehe like "I had it once 40 years ago but then it just disappeared" or this doozy from a friend last week, "I had a jaw problem before, I find if you pull your hair forward for a few min. it helps with head pain...." followed by more suggestions of things I could do to fix it (she was actually serious). ugh...



Quote:
Originally Posted by jmitchell View Post
I had to laugh a couple weeks ago when my friend said she could relate to the tmj pain because she had gotten a popcorn kernel stuck in her tooth for over a week, and she was in a lot of pain over that. Are you kidding me? was what I was saying in my head, but I just politely nodded and said, "yes, that must have been horrible.." Even my husband doesn't really understand the pain associated with it, and I have to remind him that sometimes it's so bad it makes you want to vomit, and I can't get everyday chores done like how I would want to. It's terrible..

 
Old 08-05-2009, 02:22 PM   #7
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Re: Why is it so hard to get people to understand tmj?

I've found that a lot of people will try to relate with what I've told them about my TMJD by telling me about "this one time when they had really bad tooth ache". That really grates me inside but I just pull the sympathetic smile and nod at them.
I know tooth ache is horrible but TMJD for me feels like every single tooth in my mouth is aching, not just the one and not just "this one time" but for a long time. *sigh*

 
Old 08-06-2009, 05:21 PM   #8
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Re: Why is it so hard to get people to understand tmj?

Also, what a lot of people dont get is that it is more then just a mouth problem. They dont get that it affects you in so many other ways such as, back, neck, nausea, smiling, facial expressions, ear aches, excruciating headaches, bite messed up, stiff jaw joints, talking, eating, pressure...and so on... and sometimes these symptoms are all at once!

they think it is just a small mouth problem but it is so much more!

sigh.

 
Old 08-07-2009, 06:32 PM   #9
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Re: Why is it so hard to get people to understand tmj?

LOL @ the stories when people try to relate. I was also in a car accident and people think my pain is from THAT.. and theyll go.."why are you still in a pain from an accident".. i understand that they dont get it, but there have been times they are downright rude.....
my husband kind of gets it now, which is good, he is frustrated that my joints are displaced after so long. and hes frustrated that we cant eat together because i usually eat yougurt or something while hes eating steak for dinner. i got TMJD right after we got married,so it has put a lot of pressure on our marriage.

Andrea: thanx for the hug

thelmalouise: im sorry about not getting disability. we switched to Cigna insurance and they dont cover it at all, so i cant even get regular treatments at my tmj place i go to. im going to search for the TMJ organization thanx

 
Old 08-07-2009, 06:35 PM   #10
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Re: Why is it so hard to get people to understand tmj?

thats so true. i think they think im nuts cuz i always have new symptoms.
sometimes i cant smile at customers and thats one of our requirements!

Quote:
Originally Posted by BekahJan View Post
Also, what a lot of people dont get is that it is more then just a mouth problem. They dont get that it affects you in so many other ways such as, back, neck, nausea, smiling, facial expressions, ear aches, excruciating headaches, bite messed up, stiff jaw joints, talking, eating, pressure...and so on... and sometimes these symptoms are all at once!

they think it is just a small mouth problem but it is so much more!

sigh.

 
Old 08-07-2009, 06:38 PM   #11
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Re: Why is it so hard to get people to understand tmj?

BekahJan:
LOL *pulls hair* *OUCH* didnt work

where in east bay? i used to live there myself.. by Pittsburg

Last edited by realistikk; 08-07-2009 at 06:38 PM.

 
Old 08-07-2009, 07:16 PM   #12
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Re: Why is it so hard to get people to understand tmj?

Quote:
Originally Posted by realistikk View Post
thelmalouise: im sorry about not getting disability. we switched to Cigna insurance and they dont cover it at all, so i cant even get regular treatments at my tmj place i go to. im going to search for the TMJ organization thanx
Oh I did eventually get approved but had to hire a lawyer and have a hearing before a judge and was then awarded past benefits and approved ongoing - but had I had cancer or some other more common disease or medical condtion that more people do relate to and understand it would have been a lot easier.

 
Old 08-09-2009, 04:44 PM   #13
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Re: Why is it so hard to get people to understand tmj?

hehe...I will tell her it didnt work lol I actually live in Pittsburg.


Quote:
Originally Posted by realistikk View Post
BekahJan:
LOL *pulls hair* *OUCH* didnt work

where in east bay? i used to live there myself.. by Pittsburg

 
Old 08-19-2009, 05:54 AM   #14
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Re: Why is it so hard to get people to understand tmj?

getting people to understand this, i think, is one of the most difficult things to express.
when i first experienced symptoms there wasn't as much pain as there was disorientation. i literally thought i was losing my mind. my mother wouldn't help me but eventually, because she was frustrated, handed over the remainder of my trust fund (which was way less than it should have been) so i could pay for this treatment and she could remain willfully ignorant.

it's one of those things where if one thing goes wrong, everything is affected. only until i had something documented on paper did people really start taking it seriously. the fuzzy headed cloudy feeling is what tortured me the most being outgoing, an artist, writer, etc. one of my closest friends blamed me for being lazy because i couldn't work and all i did was mope around all the time. I WAS IN PAIN. meanwhile, she was abusing painkillers and opiates in front of me knowing i had this condition and she did it to get high. nothing could have frustrated me more.

after learning how to live with pain people really didn't understand my misery. i learned how to not be bed-bound but i still had issues getting around, remembering things, i would get dizzy, etc. i eventually lost my then boyfriend because he thought i was faking it. we were together for 3 years.

it was when i met my husband in atlanta that he couldnt stand to see me in so much pain and used his college fund to pay for my treatment. i never thought it would ever get better or understood but when his family would see me cry and vomit, screaming in pain, they knew there was no faking that. they also knew that after seeing my diagnosis, i cannot fake that either.

the friend that dismissed my claim is moving to the area and i don't know what to do about it. we used to be really close but i just want her to be accountable and know that what she said was hurtful and cruel. i'm just not sure how to address it.

 
Old 08-19-2009, 07:32 AM   #15
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Re: Why is it so hard to get people to understand tmj?

I experienced similar to what you posted as well - reading your post was kind of like reliving what I went through and reminding me about how mad I should be at some family members and friends. I know every one is different but when I chose to make peace and live with my pain I also had to release the anger I had with others as well - a good part of it at least - I felt keeping that anger and holding a grudge against others required too much energy and I needed every ounce of that to stay alive and make it through each day. It wasn't worth the effort as I was also dealing with the issue - and still do - that this may be a permanent problem for the rest of my life - so I had bigger fish to fry then just wanting someone to realize what they said was hurtful and that when I needed them most they were not there. I therefore accepted their "flaw" as just that - a weakness in their character and make-up and moved passed it. What good would it do to shove their face in their own flaw? - although one would think they might learn from it and try to change or evolve - I think that is seldom the case. Most people learn from first hand experience which means they must experience it themselves.

I know a lot of people need "closure" on issues - personally I think that may be overrated - as closure comes from within - but having the perpetrator understand and acknoweldge what they did does not change what occured or make it any less offensive or hurtful - but for me - withholding my friendship and excluding others from my world - to be no more than cordial - sends a bigger msg - I know that sounds egotistical but it can be an act of survival as well - to make sure your world is filled with only positive and supportive energy/people and eliminate the negatives.

 
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