Attitude of doctors and friends and family

Hi All,

After 14 years of pain, when I see doctors now, I often get the feeling that they think I am exagerating my condition. It is a subtle undercurrent of the visits sometimes. Does anyone experience this?
I often here, these pictures don't look so bad for a woman of your age.

Also, while friends and family are very sympathetic, they all think that everything is fixable, so why can't this be fixed already.

Any thoughts?

lumiere


scoliosis, sacroillitis, bulging discs, arthritis of the spine and sacrum, degenerative disc disease

I agree with Char completely. When we suffer with an "invisible disease" it's easier for others to dismiss it as being not real, or in our heads.

I'm also irritated by such comments as: "Well you had surgery, so you should be fixed."

Judgments on medication, that we don't or shouldn't need it, after all, "they" don't, so why should we?

Oh, I could go on.

It's not you, not at all.

As Char pointed out, if we have a broken bone sticking out of our skin, or if we nicked an artery and are bleeding all over the carpet, maybe they'll understand and have sympathy.

And most of us try to put on that brave face that we're doing okay,...or "okay" for us (which is generally still more pain than non-CP patients face on an every single day basis).

We see the looks, the sneers, and the judgment can be palpated in the air....

When my Nana broke her leg, the only pain medication she took was aspirin, so that generation could not understand why anyone would ever need anything stronger.

We're not all the same. It's a tough lesson, and as far as I can tell, most of us are still learning to not let it get to us,...but sure, it affects us and how we're treated.

Another good reason having quality and trusting relationships with our providers is so important. Validation goes a long way!




M.

Thanks so much guys. I am finding your input so invaluable. Thanks for being there.

lumiere

I've had a couple of doctors who made me feel like I was exaggerating or not trying hard enough. It is very disheartening, stressful, and just plain not fair when a doctor makes you feel that way.

I finally started seeing a pain management specialist who is amazing. She listens and addresses everything I have to say, never rushes me, and makes me feel validated, heard and cared about. It is like night and day to the rude, egotistical physiatrist I saw many years ago. This pain doctor took away my self-doubt, and gives me hope just by believing me and treating me respectfully.

Please try to find a pain specialist who listens, understands, and doesn't downplay or judge your situation. They do exist!

Regarding friends and family, that is a tough one to handle. At the core of the issue is that if you have never suffered from long term, chronic pain, you will never fully understand chronic pain. Most of my friends and family have only ever had acute pain or injuries. That is so, so different than chronic pain. The difference between knowing that your pain is temporary and things will be back to normal soon, versus having unending, possibly permanent chronic pain with no answers or end in sight is huge. So it is understandable that those people can't shake the idea that you can get better. They just don't get the reality of chronic pain.

The best thing I can recommend is to find some articles or websites online to share with your friends and family which explain chronic pain and what they should expect from you. It won't fully put them in our shoes, but it does help them to understand a bit better and makes them more patient. There are several articles and booklets I've seen around that are written for family and friends of chronic pain patients. I also advise you to try to be patient with them. Try calmly explaining to them what chronic pain means, what causes your pain, what can and can't be improved with treatment. These people love you, and they think they are doing the right thing by pushing you, questioning you, etc. Education is really the only way to help them understand and help them to relate better with you.

Thank goodness for our fellow chronic pain sufferers. They know exactly how we feel, what we go through. Talking to others like us makes us remember that we are not alone. :)

Wow. Thank you all!!!!

Well said, White Beard. My sentiments on the subject exactly.

David

I feel that way all the time suffering with Crohn's disease. I guess it's of my own doing also as I try to be "normal" and not worry anyone. But sometimes I do secretly wish for a bit more empathy...especially from my wife.

I think that when it comes to "chronic anything," there's room for the waters to get murky.

My opinion is that people in general, and sure, doctors and providers, like/prefer things to be clean, cut and dried, and no follow-through.

There's a basic mentality that everything in our bodies can be "fixed" permanently, and the underpinnings of conditions that are constantly degrading and degenerating are pushed to the back burner.

What surprised me was after my surgeries and even in rehab after them, there was a short-sighted vision. In the hospital, they would get my pain under control (with IV meds), and when I got to whatever their magic number was, I was shipped to rehab.

But that injection wore off. But I wasn't their problem anymore.

Then in rehab, I felt like the mentality was to get me juuuuust stable enough to get me out the door, and then I was someone else's problem.

While many problems truly can be "fixed," those of us dealing with chronic pain and chronic conditions that simply do not "heal"....but we try to "manage" them....by their very nature, brings out frustration in everyone. Problem is, it's we who have to live with it.



M.

Thank you for all these posts I have some chronic pain but episodic pain that is literally indescribable. I have no diagnosis, and no interest from any doctor at all, NONE. I have managed to get one doctor to write pain a fatigue on a medical note for my work (which I have now had to leave due to symptoms). I am desperate to work but unfit to do the work I used to do (manual) which I did for ten years despite having a academic degree. In the current climate I am unlikely to get hired even if I was fit.

I am in massive financial hardship, I often don't have enough money for food because lack of diagnosis leaves me completely unable to get what is called in the UK 'state' help (we had for a short time a government that cared about the poor or disabled, a long time ago now).

But my immediate emotional problem is that my family are really bad. Totally disinterested, all of the above! Literally they say they have aches and pains as they are getting older (one sibling) constant appeals not to bring my problem up!(another) I have been told I'm oversharing! (my issue is not gynaecological???) just constant abuse, constant referring to their own problems with the allusion to the fact that they are going through the same thing i e I am sooo pathetic that I talk about it!!who needs to voice suffering that's soo over!! this is literally their attitude. I have one relative who's reaction is not a kind of perverted jealousy????or a warped need to silence me and that's it. I cannot continually rely on this relative and so now I very rarely mention my problem around family. Never to doctors. If I spend time ith them it is really for their benefit only.

what I find most annoying is the pretence that they are going through the same thing as this is really obviously untrue. These particular relatives don't have any whether issues at all. whereas I DREAD the summer in the summer my pain becomes unbearable!! I live in the UK where summer hardly exists so...if I go from ordinary temperature to heated rooms, offices, or shops I can literally be in a lot of pain.


Sorry for such along post but my family do all of these things, my niece elicits more sympathy than me and I know for a fact she does not have my condition!!


As for expecting a modicum of respect that even the most benighted, uneducated idiots give to people with physical disability forget it! Being in absolute torture does not entitle us to any consideration, anywhere!

Mercy & Grace
"..I also believe that alot of the ignorance is due to the media. If I hear/see one more commercial where Aleve or Tylenol enables someone to return to their activities I'm gonna scream ! Same thing goes for beds, braces, etc. But, these ads are designed to Sell Products and not be informative let alone accurate. Every time I see a commercial for Medicare and the braces you can get to stop knee, back, etc pain, I wonder how many people were really helped. I do understand that there are many things that these meds and devices might help. But, after a point, they just won't make a dent in disabling pain. What is really bad is that this Media Mentality for those who suffer chronic severe pain has influenced the medical profession. .."

You accurately stated what has been rolling around in my subconcious for so long - Thank you!!

Everyone made good points..
Again, thanks to all for speaking up to help.. no matter how many times This is discussed you'lls answers never fail to give me a little bit of the warm fuzzies that I do not get from family & friends

It's frustrating.

My Mom is 77 so y'all can imagine her mind set.

I've had a respiratory infection I've been fighting.

She said "It's probably caused by that pain medicine you take."

Rick

Hi MagicRat,

As long as you have the support of you spouse, you will get through. I have found this is very important. Rest assured that there are many, many people who suffer from chronic pain. It is not easy, not easy at all. This forum is wonderful.

Great that you actually have a Lyme Disease diagnosis. Not very easy to do.

Hoping that things get better soon. I guess we cannot ask tooooo much of our extended family and friends. Psychological help has been very good for me. Someone experienced with pain management. Many techniques and you can talk away.

Lumiere

MagicRat. . .you and I are co-located. I have a compassionate PM that I have been seeing for 7 years about 30 miles to the north in the hinterlands in your new doc doesn't work out. You will be under a med contract and subject to pill counts and urine tests, but it beats the heck out of doctors that just plain cant imagine the sort of pain we are in. That said, they are showing signs of not knowing how to deal with what is now primarily neurogenic pain for me.


crazyhazeynut. . ."pain free" is equivalent to saying "I want you to prescribe me rock cocaine, a pipe, and a lighter." It is not considered a realistic goal it will get you shut down with a doctor in a single visit and it will definitely be noted on your chart. Unfortunately, we must all live with an amount of pain. . .and that applies to perfectly healthy people as well.