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Invalidation Rears It's Ugly Head Again, Sigh

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

You know I really thought I was over the kind of doctor's report I got today but nope guess that isn't the case - not over it. I had seen this rheumatologist about a month ago and when I was at my GP's today for my monthly appointment I asked if she had got his consult letter yet and oh ya she sure did. I asked for a copy of it but didn't read it til I was on my way home. I just about fell over when I read it.

On top of the contradictions in it and a diagnosis of 'fibromyalgia like condition', whatever the heck that means - I mean is it fibro or not? - he ended with the conclusion that because I had been through a stem cell transplant and all the harsh treatments that involved that I was overly concerned or preoccupied by medical symptoms. WHAT? In other words I was what 'making them up'? OMG if that isn't invalidation big time, not to mention just plain nuts I don't know what is. I have been in constant pain ever since the transplant and diagnosed with a ton of things and this guy who meets me once, doesnt do any xrays or ct's at all decides it's all in my head? He constantly misquoted me in the letter to my doctor or left out key points to my answers. Luckily my family doctor has been with me through the whole treatment for 24 years but to have a new specialist be as blunt and judgemental with no real input as this nut was just bothers me to no end. I wake up in pain each day and my day isn't started til my morphine kicks in and by the way who prescribed the morphine? The ER doctors who I saw regarding my horrendous back pain which showed arthritis in the lower back that this guy was also questioning. Sigh.

I was numb on the way back from the appointment today after reading his consult letter and for the first time I thought 'scwew it maybe I should just give up on trying to find answers'. This letter was nothing short of personal slander and invalidation and I'm not sure what to do with this. Should I write a letter to him or to my GP, or both, letting it slide seems wrong. I sure hope I don't lose the support of my GP with this kind of negativity coming back. Some of us survivors don't present to docs like normal folks but this guy had no idea about it all. He even said in his letter that he had no knowledge of any syndrome or symptoms like I have with pain from head to toe after having a bone marrow transplant or in fact being a long term survivor. GARBAGE. We have all seen, over and over the results of harsh treatments on our system and by the looks of it this guy hasn't picked up any reports on after effects ever, let alone long term survivorship issues.

Sorry for ranting but I just truly feel numb from this. I have suffered for 18 years in pain and this is the result from a so called specialist. I have already asked for a second opinion, maybe I'm just letting myself in for more abuse. I don't know.

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

Hi Blue. Sorry about the added stress. It seems like another doctor that does not take time to read films, medical records or even listen. Along with keeping up on the latest medical news about cancer effects and treatments. Don't start second guessing yourself here as we have all done that. Sometimes thinking we are crazy until we talk to someone else with the same problems during and after cancer treatment. Just tell your GP that the doctor was an idiot that didn't do his job. Its doctors like that, that can get patients hurt. The ones that tell you its all in your head or they can fix everything with one simple pill. So we second guess ourselves and end up causing more harm and pain that adds to our pile of problems for many years. Three days out of high school I worked at a mental instutution. There was a little woman that everyone thought was completly crazy. Then one day a college intern came into the facility who spoke French. We quickly learned that this little woman was not crazy, she was speaking in French! It was a real wake up on how our systems can be abused by doctors and psychs who think they know everything. Keep pushing forward Blue. This was just one doctor and one report that does not matter. Hugs Slickwilly

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Thanks for the positive feedback Slick and I so agree with all you say, in fact I have given the same pep talks (or similar) to people on this board as well but this time is different for me. Call it being worn down by this type of 'physician', invalidated, demoralized, or all of the above but I was blown right off my feet by this. 18 freakin years of head to toe aches and pains and finding some answers by some docs, only to have this guy discount even their findings in the tone of the consult. It was truly devastating. For the first time in, hmmm, forever I guess I really feel like throwing in the towel on trying to find myself help. Even as I type that I know it's wrong but I am worn down and do feel defeated. With only a few careless words in a consult these so called - doctors who obviously have no time to work on a true diagnosis for a patient (hello, he didnt even run xrays but yet had something to say about the arthritis which is sarcastically put in quotes yet. Jerk. I have xrays done and recently too that show the diagnosis as lower back disc degeneration/arthritis but how would he know because he didn't bother to look or order his own.

This time is different, I feel it. It's a 'what's the point' moment for sure. I did ask for a second opinion and my GP is working on that but now I am afraid to go for any opinions - fearing the same type of treatment that only can be explained as ignorant and uninformed. Good thing I'm not on the edge because this kind of thing no doubt in other situations I can see could really push a patient over the edge.

When I was diagnosed first and even on the reocurrance I was proud of myself for how I didn't let the diagnosis stand in my way of getting better and moved forward with it all - being around for my kids as my ultimate goal. Then in one stroke of a consult this guy decides that the reason for the aches and pains, never having met me before or seeing my history in all, decides that dealing with lymphoma and a transplant is what is causing the symptoms. OMG I can hardly believe the insolance and light way of dealing with a patient who has been through and continues to go through so much, a patient who has come to him for help and he has so randomly treated me the way he has.

Hope you have a good day Slick, thanks for the input. Blessings, Blueroses

green50
Posts: 318
Joined: Feb 2008

Second opinion second opinion. I would still go for another opinion. My friend has fibermyalgia and that is no laughing matter. Even if you don't have that, you have something thats causing pain and need it looked into. My friend has 4 diseases and she has went to a"few" drs. I know over the years you have too but I would say get another opinion. It could be from all the treatments in the past and all you have had done. I mean sometimes we can't do anything but take pain pills but least they could pin point why. I am sorry you have to go through this again. Seems like the more we have done the more things come up. HOpe the next Dr helps you.
Prayers and Hugs
Sandy

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Thanks for much for the support in this matter. I won't repeat myself as I typed most of how I feel out to Slick but I did, in a knee jerk fashion, request a second opinion. Not sure I am eager to go to any more consults though if I am going to be treated like this again. Seriously, if I thought that I had the problems this 'doctor' said I did I would seek that appropriate treatment - I'm sick not stupid. This time is just so different in how it's affecting me, guess I have had enough.

When I was first diagnosed it was a real trail blazing time with after effects - because of adults now who were diagnosed as kids it was obvious for years that side effects happened after treatment because they were still growing when toxic treatments hit them. However with better treatments we who were treated as adults are living longer and are coming forward with side effects too but we have a bigger battle to fight. In the states you guys have won the battle for the most part with late effects clinics who validate these things but here in Canada, and I just checked recently, no such clinics exist. Too bad for us.

Anywho I should go and eat lunch. Thanks again for the care and thoughtful response Sandy.

Have a good day. Blessings, Blueroses

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

Hi Blue. I doubt there is anything I can say that will make you feel better. You know I love you and would be glad to drive my drug induced body into Canada so we can take on this doctor together. Sometimes we just need a break from the whole system. Last year I skipped my brain tumor MRI and took some control back. It might not of been the best thing to do as there could be a mellon growing between my ears. But that year off and the month it usually takes to sort out my tumor size and location was worth it. I could divorce my wife and marry you so you could come to the U.S. with a green card. But my wife would no doubt take everything including my dog and I would be living in a tent. I wish I could help more. Have a good nights sleep. Slickwilly

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

You got a smile out of me with that posting, not that easy to do right now - good job Slick. You have a way of getting around grief I personally enjoy as do alot of others on here. You're a good guy. Thanks for that. Talk to you soon, not feeling much like writing right now. Blessings and a hug, Blueroses.

tonybear
Posts: 92
Joined: Mar 2009

one of the first things i loved about this site is that it is about those of us who have suffered with some things. most doctors have never had the side effects, the pain or the treatments they dish out on us. yet they are willing to give an opinion based a healthy body with an over educated mind. i know not all doctors are this way, but there are just enough of those types to make us question the rest of them. get a second opinion, or maybe a third now. my sister has been a rn since the civil war (that was here in the usa) and she can tell some stories about some doctors she has set straight. truthfully, the nurses seem to be better at doing their jobs and the doctors job. i am a male, but i think that male ego can get out of control at times, hence god created woman to "help" us men. sorry i got off track there somehow. i hope you get better. you gave me some advice in another post about getting back to playing guitsr. i have taken your advise and have started again. as always, thanks for your support and advise. tony

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Oh I'm so glad you got back to your music, bet you will find yourself feeling much better through playing, excellent news and no need to thank me for the advise - heck if we can't share our experiences and things we have learned through our individual cancer experiences then what was the point of it all? Everything for a reason.

I am trying to find the reason for this last 'specialist' I saw, for his irresponsible consult. So far no answer back on that one but I do believe that everything happens for a reason. I have been in touch with The Lance Armstrong Late Effects Clinic at Dana Farber - its a clinic for adult onset cancers and it's side effects so tell me why there would be the need for such a clinic if there were no late effects, would you? lol. That's what this nutty rheumatologist has decided - no syndrome that would cause aches and pains in long term survivors of bone marrow transplants - GARBAGE. Anywho I have asked The Lance Armstrong Clinic to send me some medical research on late effects and hopefully they will get back to me with that so that I have info for the docs. Up here when I called our two biggest cancer centres and asked them about late effects they had no idea what that meant. Sheeesh where do I live, Mars? This isn't exactly an unknown subject. Pretty depressing.

Anywho the invalidation has really hit me hard, I'm surprised by it really, I took my whole diagnosis and transplant like quite the trooper I thought and I think that was the worst part of the consult was when this specialist said he thought that the stress of the diagnosis and transplant made me ultra sensitive to medical symptoms. What the heck? If I have the symptoms then isn't that the point - so what diagnosis goes with them? This guy made no sense.

Anyways I should get going, the weather will be very nice here today so I'm going to try and get out on my balcony and enjoy the next two days of 70 degree temps.

Thanks for your supportive words Tony, take care. Keep playing !!!!!!!! Hugs, Blueroses.

Pnktopaz10
Posts: 56
Joined: Oct 2008

Hi Blue
I just read your post and I am so sorry that you have run into such a bad doctor. Please get that second opinion. Not only is it imperative that you have confidence in your doctor but you have the right to have your doctor take you and your symptoms seriously. I wish that there was something that I could do for you. The ENT that I went to for the lump in my neck told me that he has had cancer and that he understood the fear that I was going though~ and he did. He did everything he could to put my mind at ease. When you come across someone who is insensitive and dismisses you and your symptoms drop them like a hot potato and find someone else. The song Walk a Mile in My Shoes comes to mind. No one knows what a person is going through unless they really listen to what that person has to say.

Side effects from radiation and chemo are real and different for each person. Keep looking until you find someone you can have confidence in and that will take you seriously.

Back in the 70's I was very ill and I had a dr who told me it was all in my head. Never mind that I was down to about 90 pounds. It took me leaving my home town and going to grad school to find out that I had Crohn's disease. I have dealt with this disease for over 30 years and in the past 6 years was taking remicade to ease the symptoms. The remicade worked and for the first time in more years then I cared to remember I was pain free. Unfortunately remicade probably was a huge factor in my getting non-hodgkins lymphoma therefore I can no longer take the one drug that put me in remission for my disease. I went through a few insensitive doctors until I found one that understood Chron's disease and have now been with him for about 25 years. My point is that there are doctors out there that can and will help you deal with the after effects~you just have to find that person.

Please don't give up. Dump the insensitive cold and find someone else. There is someone else out there that can help you. I truly believe that. I send you the biggest hug I have! Hugs, Pnktopaz

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

I have now got an appointment for a second opinion with a rheumatologist and sure hope that goes better, how can it go worse huh? lol. The appointment isn't until the end of next month but that's fine. I also contacted a late effects clinic in the U.S. and they are going to send me some info on it all as well so I hope there is validating info in that as well. I am out of my deep funk about all of this, just like I have been in the past when I come across Dr. Insensitive but sure not looking forward to my next encounter with one so hope it doesn't happen again.

I remember a time when I was referred to a shrink for thinking my heart was acting up after the transplant but I knew it wasn't stress or me going bananas and sure enough 18 years later I am into big trouble with what they now admit is chemo damage to the heart. Same deal for memory and cognitive difficulties - now they are seeing it. There just isn't enough research yet on adult onset cancers and their late effects but it's coming. The trick for survivors is just to keep on keeping on - staving off invalidation til they see it themselves. Sheeesh.

Thanks for your encouragement. Hope all is well with you. Blessings, Blueroses.

Pnktopaz10
Posts: 56
Joined: Oct 2008

I am so glad that you are doing better! That is terrific. It is too bad that there are insensitive doctors out there ~life can be difficult enough without that added to the equation. If only doctors would realize that there are many patients that like to be informed and know what is going on with their bodies. I wish there was something that I could do to help you. Hugs, Pnktopaz

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