do you ever find no matter who you talk to unless they are in a lot of pain themselves they just have no idea and seem to not care or tell you "yes i know your in pain you don't need to keep going on about it"
Its so frustrating especially when people say oh your fine just deal with it .
I honestly could not be happier i found this forum! i hope this is going to be a god send to me
Sadly it matters not whether you are in pain or have a disability. The only condition people really understand is if you are in a wheelchair and can never walk or have a Guide Dog or white cane. So many don't know what to say to you or how to react. There is a fear they may do something wrong or even worse...catch it from you!
x
oh no i didn't mean that i meant people just don't sympathise or understand how much pain i get, its not the looks from strangers I'm talking about doctors nurses partners etc x
Doctors, friends it matters not!!.
x
sorry I am slightly confused lol I'm talking about sympathy from people , I'm in a wheelchair if I leave the house and people don't stare and thankfully ive never had people think they can catch something wrong with my bone, more thinking I was a drunk stupid girl who fell and did something that's the most common thing I get asked , its just outrageous
or thinking I'm faking it to get attention which is another pet hate lol
At least you have some outward "excuse". I have a handicap parking placard and have been confronted more than once for "driving my grandma's van" (I'm 30 and have had 3 knee operations, two open-heart surgeries, two spinal surgeries, and was told twice I may never walk without assistance (if at all).
So this is where you have to be strong and calm and say " Never judge a book by its cover" or " The reason for your comment is?" Just have these replies ready for when it happens next time would be my suggestion and other suitable comments you can think of. It might ( one hopes) make them stop and think
I got fed up with a woman once who actually yelled in a parking lot, "Well, you don't LOOK very disabled!!"
I calmly replied, "And you don't look all that stupid, put here we are!"
She left and I went shopping Not my best moment but I don't regret it.
that's an amazing response! well you done you should be proud of yourself you stood up for yourself. Oh I don't take comments like that lying down I might not be able to walk but my mouth and brain sure work lol.
I bet people who say things like that to you ae the same who have no kids and park in parent and child bays in car parks
Most of them are just professional victims, always on the lookout for the next excuse to feel someone's upset them.
Some people deserve the barrage of abuse back threat they force on the innocent. One of my comments was 'being rude comes so naturally to you let's hope this never happens to you' and walked away !!!
Well done for not letting her get away with it.she really was a silly cow.i literally cant believe the number of people who tell me i look well when im in pain and can hardly walk round lidl due to back problems.its not that we want sympathy.just a smile and comment bout the weather even.if they feel the need to say something!!!
Unfortunately this happens a lot and also in workplaces to the point that you feel discrimination. For example: in some cases they will even come up with "a plan" to make it sound that it's caused by or has a direct link to work on a referral to a occupational therapist, when it's clearly NOT. Believe me I've seen it all! This is why I no longer bother communicating with these so called "people", it's just pointless, they do not understand or have an inch of empathy and many will just use it against you given the slightest opportunity. My advice would be stay strong (as strong as you can, I know it's not easy), be courageous and tread carefully, be selective of who you confide in or share your experiences with. And for doctors, don't be afraid to get second or third opinions. Take it from me, I'm nearly 2 years into an ongoing battle to try and establish the cause of my severe pain. Nothing I have tried has had any positive impact in managing the pain. I continue with investigations both medically and some in my own time and will not be defeated even if the first medical response I received was "It's all in your head" and an additional dosage of " if you want painkillers you can go to Sainsbury's and buy them there" at A&E while crippled and bent over in agonising pain.
I know exactly what you mean, I have chronic pain due to two prolapsed discs and arthritis, but I also am carer for my husband. When I show that my pain is bothering me, he just says "I know you keep saying", or his favourite " take a tablet" like its that simple. I think people get bored with hearing it but don't understand how hard it can be to live with a long term condition. And sometimes all you crave is a hug or a little understanding, it can be very hard, especially when you feel taken advantage of because you're the kind of person who just gets on with things, so people think you can't be suffering that much if you can still do the shopping or housework. its not that you're not suffering, its just thet you have no choice. so here's a (((big hug))) from me, to say I do understand your pain!
That can be incredibly frustrating and painful to experience what you relate- especially when it involves family and friends.
It doesn't mean that they don't "love" you any less- they can only take 'so much' and have their own lives to lead.
Life today is so pressured and full on- anything extra becomes a burden.
And so we motor on in our own little bubble of misery.
I try to minimise my feelings as much as possible--- I feel that I have only a finite amount of " good will" in the bank and draw on it sparingly.
Most days I suffer in silence.
Mind yourself and treasure those around you.
unfortunately those at the ones I'm talking about lol also suffering in silence just isn't an option for me , just moving causes me immense pain i just cant hide x
Until you've been in someone's moccasins...
People are fortunate without any illness or disease.
Maybe they are in denial?
Yeah that would make sense , most humans like to live in their own worlds without giving much thought to others
Yep
Totally agree with you and yes it's very frustrating........ I think because people CANT SEE something it doesn't exist but believe me it does........ but if I'm honest before my pain I probably would be the same and u can't KNOW how it feels until you are living it as generally people can't even believe to imagine what it's like to be in pain 24/7 so have no understanding of it........ but I know how u feel and lots of other people do ........... it's nice to know someone else's feels the same ( although I'd prefer it if no one had to live in pain)
Your welcome to message me if u want too x
Ive been in and out of pain since I was 12 but even before then ive always sympathised with others, I guess some people are carers and some people are just self obsessed.
Yeah that's a nice thought it would be amazing if no one had to deal with pain especially children its a cruel world we live in
Thank you same to you xx
I do Understand how much pain you are in I am pain everyday and every night
I hear you and sympathize,there is nothing worse than putting up with the pain and the absolute arrogance of everyone including the pain doctors.We are still here si we are dealing with it all in our own way.I always say to these people"walk a day in my shoes and see how you deal with it.
I know pain doctors especially just don't seem to care its all about moving onto the next patient and getting it done. They think just because they went to uni that they know everything but we know our own bodies better than they give us credit for. I nearly lost my child during childbirth because a doctor didn't listen to me
Its all about money at the end of the day.These pain drs and so called Fellows read a few books and act important.Half of these pain drs are looking up what medications to use while im in the room,no wonder i have lost all faith in them.No idea about dealing and living with real pain.What works for one person might not work for another,Ive been going to the same clinic for over 20 yrs a complete waste of time.Unimpressed with pain drs.
Its so frustrating, but surely if most people like us al over the country are being treated like this they need to take a long hard look at whats going on in the NHS its a joke
Im in Australia,these Drs go on the statistics from America.Australias health systtem works great for the rich but for those of us that are public patients the medicare system they use is disappointing to say the least.We are years behind everyone else.Im coming back an animal,the care factor is more favourable towards animals.
The fact its all over the world makes it even worse I think
Too right its world wide.I feel like im alive inside trying to escape this pain riddled body.Im a prisoner or a crash test dummy for pain specialists. Life deals some of us a real crappy hand.I hope you find some relief somewhere.
I have the same issue, even with my wife. Unfortunately, this is ESPECIALLY a problem with doctors! I'm currently trying to find a cause for severe scapula pain, and the first orthopedic surgeon I saw basically shrugged and said, "Take some Advil and it should clear up."
Second guy I saw, I decided to write a six-paragraph letter to hand him instead. It explains the pain in detail and how said pain is worse than most of the surgeries I've recovered from. That finally got his attention, somewhat, and when he asked if I tried taking ibuprofen (in the two years since it started hurting) I told him yes, of course, then offered him my pocket knife and told him he could fix me up right there on the exam table if he promised to make the problem go away.
That's what it took to get the message across. Most people who hear you say "I'm hurting" will remember that time they stubbed their toe and got a hangnail, and decide that's what pain must be like. They don't know or care what limits we have for tolerance or how much our own bodies can torture us.
Yeah my partner god I love him but hes not got a sympathetic bone in his body unless I'm on the floor screaming , hes just a "typical" bloke and just pushing through things like "pain and emotion" lol
luckily my mum is a nurse so she understands, as long as everyone has someone who they can confined in and talk to about it instead of blocking it all up which only makes it all worse
With Atypical trigeminal neuralgia when my daughter took me to A and E as my neurosurgeon was there you have to be seen by a triage nurse and she said to my daughter has she tried paracetamol. My daughter looked at her in disbelief as at the time I couldn't talk and she passed the nurse this massive bag full of medication and said she is on everyone of these to the max. The nurse said what is it she has, my daughter said to her have you ever heard of the suicide disease or atypical trigeminal neuralgia .... The nurse said no! Then told us it would have to wait to see a doctor before I could see my neurosurgeon. Luckily the doctor saw me straight away and said I am so very sorry you are in so much pain it is a terrible condition I will get Nick Patel now. He came and said we are going to operate now and they did and to be honest I don't know what I just done without him while I do that's why it's called the suicide disease.
And to top it off I know I have fibromyalgia to keep it company! As if ATN was lonely!
So I think all in all we have seen many people who don't understand.
My neurosurgeon said get a pin and stab your husband in the leg with it when I said he didn't understand and when he goes out so that's nothing to what I've got going on in my head LOL
Wishing you all happy and healing thoughts X
With Atypical trigeminal neuralgia when my daughter took me to A and E as my neurosurgeon was there you have to be seen by a triage nurse and she said to my daughter has she tried paracetamol. My daughter looked at her in disbelief as at the time I couldn't talk and she passed the nurse this massive bag full of medication and said she is on everyone of these to the max. The nurse said what is it she has, my daughter said to her have you ever heard of the suicide disease or atypical trigeminal neuralgia .... The nurse said no! Then told us we would have to wait to see a doctor before I could see my neurosurgeon. Luckily the doctor saw me straight away and said I am so very sorry you are in so much pain it is a terrible condition I will get Nick Patel now. He came and said we are going to operate now and they did and to be honest I don't know what I would have done without him while I do that's why it's called the suicide disease.
And to top it off I now I have fibromyalgia to keep it company! As if ATN was lonely!
So I think all in all we have seen many people who don't understand.
My neurosurgeon said get a pin and stab your husband in the leg with it when I said he didn't understand and when he goes ouch... say that's nothing to what I've got going on in my head LOL
Wishing you all happy and healing thoughts X
its funny really everyon has the same story of doctors and nurses saying have you tried paracetamol and ibruprofen lol its actually a joke tbh, ive been in hospital loads and they try give me that I'm like I'm on 3 very strong painkillers all day everyday what exactly do you think those two are going to do to me , I find it very insulting , especially from people who are trained to see whats really wrong
I have arthritis, have had one hip done, now waiting for other hip and then knee, it is also in my spine! My ist op has sadly left my leg 1 n half inches shorter than the other leg, I have to use a walking stick to balance myself out, the pain some days is WELL I can't explain it to people and sadly THEY DONT UNDERSTAND, then other days its still bad but to me its quite a good day compared to others, I also have a blue badge and when my daughter takes me shopping people look at me as if to say there is nothing wrong with me, I just think if they had my pain they wouldn't comment or stare!!! I still work but have had to cut my hours down, which to be honest has left me financially worse off, but I am determined not to let this disease beat me (Although I know it will in the end),
Until then I'm like alot of you people out there,
Keep smiling if you can, Its hard, it takes a lot of your social life away,
I'm unlucky that I live on my own with nobody on hand to give me that vote of confidence, or that cuddle when I'm feeling low or fed up.
Onwards n upwards eh!!!!
oh I'm so sorry to hear that that makes me sad, everyone needs cuddle when they are down! how about your daughter do you see her a lot?
i think certain things should be taught in school so people aren't so blind to whats going on in the world
Keep smiling your doing great
Yes I see her everyday, she is a godsend to me, I have a very caring family as well, its just when you live alone its hard not to have anybody there to talk to or give ya a cuddle!!!
I'm probably not on my own in this situation, there are thousands like me,
Thanks for your reply x
you never know what the future holds you could find someone before you know it , ive got my fingers crossed for you. Children are a godsend Mine keeps me going everyday without him i wouldn't be here
Always here to chat x
Thanks for your vote of confidence, like yourself and other people on this site its nice to know I am not alone, xx
Very true in deed, I stopped talking about my pain to other people because they have no idea, as I said in one of my other posts, if we had a wire we could plug into us so that we could plug into others like doctors to show them what pain we are going through they might think harder about getting rid of our pain but until something like this happens the only place where we might get help is on this site,
My sympathy to you and others like us and lets hope we can help each other on this site.
Rick.
It certainly would be nice to have a way to transmit our experience with pain to others, even if it is just for a short period of time.... I have had to try and explain to one of my sons how it feels to be me - "imagine having a blow torch held up to your feet and not being able to get away from it", or "imagine standing on a bed of nails with a railroad spike going up through your heels" - unfortunately, until people experience pain on a continual basis for an extended period of time they truly don't understand. The best doctors and therapists I believe are those who have had their own personal experiences with pain and/or trauma.
I know exactly how you feel. My son said to me when my pain was so bad oh not that old chestnut again. Those words broke my heart. So now I don't tell anyone that I am in pain.
Omg that heart-breaking 
out of the mouth of babes eh
I totally agree. My friends and family have been brilliant especially when I had tonsil cancer. Now that I have had osteoradionecrosis that has been continuing for 3 years I am trying to keep it to myself more. It's hard when the pain is there all the time though.
yeah having no relief even if its for 10 mins a day really gets to you, its like having someone constantly smashing at your head and you cant escape it or make it better. I just try to occupy my mind, I'm currently doing a bookkeeping course from home and i find that's its helping me with a focus
Good luck thats something positive to focus on.Do whatever you can,you can but try.
I hate when they say "l know how you feel or well l had to get a hearing (79 year old) lm 45 and undiagnosed CRPS has spread throughout my whole body affecting eyes and hearing n many other organs and immune limbic circulation etc etc. The worst part is when they say you look fine (yet they had just walked past as didn't recognise me as dissapeared out my life when l was of no use to them any more as can't drive or hardly walk. I've lost most of my long hair and so much weight and pale white, but they didn't have to tuck their loose skin n wasted muscles into baggy clothes or try to hide bald patches on their heads or wear huge incontinence pads, but pain is invisible and sadly l am too even to people who l would have done and have been there for through thick and thin. I put a face on for a long time and pushed myself to try be 'normal' but now l'm sick of being ignored told to get a grip or just get on with things so l have had let go of a lot of people who did me more harm than good and look elsewhere for support where l don't feel a lesser person because l'm disabled and in chronic pain 24/7. I'm not looking for sympathy l'm looking for company where l don't have to apologise for being sick as this wasn't my doing or my fault. It's hard enough to accept how much life l've lost and what the future will be as no treatment or cure for widespread CRPS as NHS told me it was all in my head for 12 years until l changed GP and saw rhuematology 2 months ago who told me it has been CRPS since a serious car crash l had in 2001. It's the worst pain syndrome known to man yet most Dr s specialists never heard of it so it must be psychosomatic, however l was discharged by mental health specialists as don't have any mental health disorders n lm determined n resilient but still the pain team refusing to see me. So...... Please, just be grateful that you are not like these folks who have no compassion for others difficulties and pain and everything else we have to live with. Stay strong, and never let anyone cause you to doubt yourself or feel less than. You are worth so much more than that. God Bless!
I understand what you mean nobody cares they keep giving you tablet after tablet not doing anything to help you relieve the pain.
tablets just don't work , nothing works unless you find a solution to the problem
I never could relate to chronic pain even though I had arthritis and other pain as there was always a way to address it (NSAIDS, Tylenol, acupuncture, etc) until my own pain worsened. I thought maybe other people felt pain worse and didn't realize how bad it could get until mine got worse. I still stay away from opioids but now can relate more to others. Not that I thought they were faking but like other issues sometimes I had to experience it to relate.
everyones pains are different and you could have a grup of people with the same thing but it affects people differently and what works for some doesn't work for others.
Its about being open minded. at least you see things differently now you've experienced it yourself
Yes and I want to add that an issue that has bothered me with various physical issues is when folks say, 'just exercise more', or 'eat this or that and you will feel better' or, 'take this herb', 'get rid of your carpet', etc etc. I always say I have tried all of it but many insist that their method works.
I hear you there it gets a bit boring after a while.I completely sympathize with everyone here.
I do understand how you feel. I think its very difficult for people not suffering chronic pain on a daily basis to have any understanding of those that do suffer. I think because they don't know what to say, they change the subject or try to compare your pain with theirs. Maybe they feel embarrassed at not being able to comfort or reassure those in pain. Of course some people aren't interested in anyone else's ill health.
Heltadelta.
Hermes123 Yes most deafeningly and family members around you all the time are the worst, "O" stop moaning about your pain, then you get the acquaintance that just see you once in a while, say to to you, are you feeling OK you look like you're in a lot of pain today. What is it about familiarity breeds contempt?
Young people with pain
Lincs Pain management changes
people with chronic pain
Pain or FND
