I suppose this is the almost universal question here

Any thoughts?  So many of us in the same situation.  How do you get a GP to understand that you don't WANT a disabling disease, be it MS, SLE, whatever?  Our pushing the case and listing symptoms etc. just makes the less competent among them assume we somehow desire to be ill with a lifelong cureless disabling condition.  They don't get that all we want is answers.  Is it just a female experience?

My GP got so offended when I told him he had chosen his speciality, a difficult one, General Practice, but that meant he was not in the same category as specialists in certain conditions when it comes to diagnosis.  He sat there refuting information I had gained from a direct conversation with a clinical nurse specialist in a world famouse centre for SLE, as if he knew better.  This wasn't me spouting some page off a dodgy website, this was from the mouths of those whose working lives are about understanding this disease, and yet he claimed to know more.  I gave him my list of symptoms, he said "you are just reciting symptoms of lupus".  I asked him who on Earth would want this illness?  I told him that if I had to choose between him telling me I did not have this condition, or a world expert, I would be more confident in the opinion of the world expert.  Did it need saying?  

I haven't got TIME for this.  Clinically he is not up to scratch.  And he knows I know it, and he probably suspects I also know about the reasons for his recent change in attitude.

He told me I was lucky he was prescribing for me at all.  No increase in meds, after telling me all about how he had to protect his license and he this and he that and I said "so it's all about you then" he added that I could go into respiratory arrest.  Well I took the increased dose, for some weeks, and I didn't (apart from the toddler tantrum episode).  I told him how grateful I am for his trust and giving me back my life in prescribing for me, but I can't escape the fact I have upped the dose, for the last time.  I just hope I don't get another severe pain episode again.  

I am in fear, that he will cut me off, he is clearly sick of me.  He bullied me into making an appointment with a pain centre.  I have been through sevral of them.  They patronize and offer inane and useless advice and even belittle their patients.  I am a Psychologist by profession.  I am old and slow and out of practice but I can do without another useless hospital appointment.  But GP is playing "I'm the daddy" with me - if he asked me to suck his toes I probably would have to.  Does he think this is earning him my respect?

Why do so many of my relationships with doctors end up in this cycle of abuse?  I am female, I am in their eyes a drug addict, I don't work inside the system, I am medically trained, I am a stereotype alarm bell category 1.  Yet all the medical evidence is there.  They can't accuse me of drug seeking behaviour because I don't do it, and it would be easy enough to trace if I did.  They can't say it's all in my head because they have the medical findings, solid evidence.  There is a lot wrong wth me.  And the stereotype indicates there shouldn't be.  

The arrogance of that man.  In his efforts to show off how much more he knew than any other doctor on the planet, alongside telling me of his faultless memory, he forgot that SLE was HIS suggestion!!!!!  Now suddenly I have turned into a patient who craves this disease and will invent all sorts of symptoms to prove it.  One day, when he stops prescribing for me, may that day never happen, I will confront him with how he has broken my trust by gossiping with this malicious old GP.  My name will be cleared, no question.  If this current doctor is the type who is swayed by the spiteful words of a professionally dying man, who has done nothing but harm in his working life, he will have to somehow incorporate that into his wonderful self image.

Clinically he is not good.  He isn't on top of his subject.  He misses important signs and symptoms.  He even prescribed for me a medication which was entirely inappropriate.  I had to, as I always do, look up the pharmaceutical journals to investigate it, and it was entirely contra-indicated for me on so many levels.  He doesn't notice things about his patients.  My neurologist picks up on everything from my way of walking to my eye movement to how I speak and sit.  He writes lengthy reports because he sees with his eyes open.  This GPs receptionist was picking up more about my body language than my doctor was.  She could see I was in pain, telling me how I looked.  He just wrote in his notes I was tearful and anxious.  Barely into his profession, and he is on the long road to being a very unhappy doctor ten years down the line, bitter because his patients don't respect him, disappointed that he is not always right, even maybe taking it out on the helpless elderly and infirm who come to him.  He is young yet, and I am not clairvoyant, but I seem to see his future.

He's all I've got.  In a sense he is keeping me alive.  No-one else will touch me.  And I still can't play the game.  
Can't be accused of faking symptoms to pretend I have some disease and not answer back.  This is the 21st century, and doctors still believe women want to be ill just to have their attention, like we've nothing better to do?

I hope this SLE referral is accepted.  I am so glad it was made by someone other than him.  I hope sincerely I do not have this condition.  But there is enough going on to warrant the question being raised, and it being answered by an expert.  My consultant understood that.  

No GP can claim expertise in any field of medicine, they have chosen their path, and need the humility to accept that they are there to refer on where doubt exists, not to try and diagnose everything themelves.  He gets paid a fortune for his job, and it is all about building relationships with patients and being observant and accepting the tedium of most conditions being minor.  It is not about him being a superhero multi-diagnostician of medicine.  Any practioner who thinks that is what they are, is in need of more help than their patients.

And I've forgotten what the question was, oh yes, about being taken seriously.  Lord I have a novel bursting to be written in me, instead of boring the lovely people here to tears!

wish

[slightlybroken]

I understand your frustration. It's a wonder his ego can even fit in the door of his office building. Can you say God complex? No doctor knows everything. I'm so sorry you have to go through this.

All we want in this world is a name and treatment to what has taken our lives but these doctors act like we want these diseases or want to feel this way. Based on what? Because they can't figure it out so there must be something wrong with us mentally.

It sounds like he is intimidated by you. By your knowledge. Doctors don't like patients, it seems with knowledge. Or maybe he is just mad because it wasn't his suggestion to give the SLE referral. Maybe he's a control freak. Who knows.

I hope you do get your referral and you do get your answers. Your "novel" is so beautifully put of all the horrible frustrations that many of us face in limboland and no doctor to DX.

[Deb61]

It's terribly frustrating being in Limbo Land.  I have first-hand experience.  Your doctor is out of touch, I think with this frustration.  It's too bad that he's not on your side coming up with a solution to this puzzle.  I hope he looks past all of the frustration and sees that you are a person who just basically wants someone to figure out what's going on.  

Your frustrated, because of his insensitivity to that and lack of movement forward.  I had that exact frustration and know exactly the way it feels and it's not a good place to be.  

My prayers are with you, girl, for breaking out of this nightmarish place.

Lots of hugs,
Deb