What My Doctor Won’t Tell Me

My doctor won’t tell me anything.  I think he has perfected the art, no doubt taught in medical school, of ‘keeping the patient in the dark’.  My guess is that they have a unit on this topic every year of medical school, and it is continually repeated throughout their career when they take off to tropical islands courtesy of drug companies.  Along with taking the Hippocratic Oath, I am coming to the belief that they also take, and renew annually, an oath to keep the patient in the dark.

My suspicion that this is an industry wide oath is because it’s not just my current doctor who does this.  My experience is that 95 per cent of doctors I have seen across my life (and I promise you I’ve seen more than my fair share) have been firmly committed to this way of working.

Information
Information (Photo credit: Wikipedia.com – heathbrandon)

Why would they do this?  Probably simply because it saves time.  They can push me out the door, while welcoming another patient in, all the while earning more dollars.  It makes sense…  for them.  It makes no sense for me, the patient.

I also believe it is about power.  Doctors like to be looked up to, seen as the one with all the answers.  It’s great for their egos and probably even helps them deal with the patients they lose along the way (through any number of means).  If my doctor keeps me in the dark, then I have to rely on him to act when necessary, and he loves that.  The problem though for me is that experience tells me that my doctor has far too many patients who rely on him, too little time, as well as perhaps not enough incentive to make sure I get the care I really need.

Nearly a year ago I was diagnosed with fibromyalgia.  It was my second big diagnosis within 18 months, and yet again I had been sent off to a specialist (this time a rheumatologist) to confirm the general practitioner’s (GP) suspicions.  After a rather large amount of money had exchanged hands, and a very thorough (well, what seemed thorough to me, but how would I really know?) assessment I was told I had fibromyalgia.  She then dumped the news on me that she couldn’t offer me any medication for this condition and that I would just have to get used to it (it was said a little more kindly than that but not much).  And that was the end of my appointment.

Silly me.  I walked back to the reception desk and when the receptionist handed me my receipt, I half expected her to hand me a ‘Welcome to Fibromyalgia’ pack.  You know how when we join a new bank, for example, we get a brochure explaining the services of the bank, details of opening hours, the web site addresses we will need to access the internet banking?  Wouldn’t it be great if doctors provided us with information?  It would suit my information junkie tendencies perfectly.

Being an information junkie runs in my family, and my skills aren’t nearly as well honed as some other family members, but I am one of those who immediately needs to look for information when I am faced with a new issue, problem or just a new subject I get interested in.  I need to read all I can about it.  I search the internet, I look for books, I want all the information I can possibly get my hands on.  For a medical matter I want my doctor to hand over all the information s/he has.

Unfortunately this is where I come to a fast halt.  I get a “let’s just see how it goes“.  I hate that.  I want to know ahead of time how it might go.  I want to know what problems I might come up against.  I even want to know what I can do to avoid those problems, and if I can’t avoid them I want to know what to do.  Sadly doctors never see it my way.  And that means relying solely on what information I can scramble together from sometimes dubious sources.

You see I want to be empowered as a patient.  I want to be prepared.  I want to feel like I can have some control over what is happening to me.  But there seem to be very few doctors, both in general medicine and mental health, who are prepared to help me do it.  I know doctors struggle for time, but I also know that when I know and understand what is happening to my body, then I need my doctor less.  A win-win for both of us.

One of the very real difficulties with a condition like fibro is that everyone’s experience is different.  No one can give me a list of exact symptoms I might face.  And so I don’t get told anything.  Everything comes as a surprise.  Everything that happens to my body, I have to wonder why or what is going on here, and with more than one condition I am always left wondering which one is causing the problem.

Over the past few weeks I have noticed that I have put on a little weight.  Not a lot, but to the extent that my clothes just feel tighter.  I admit that weight gain is a really hard issue for someone who is a recovered anorexic, so I have been quietly starting to panic because there’s one thing I know… I’m not eating any more or less than I was.  All the old fears come into play of being out of control and the need to take back that control by restricting.  I’m not about to do that, but it is a very real war in my head that any recovered anorexic will tell you.

With one of my conditions (Graves’ Disease) I am meant to panic and get straight to a doctor if I have a sudden weight loss.  With the other I had no idea whether it was even an issue.  So information junkie Cate had to start searching again, and found that unexpected weight loss or gain can be an issue for people with fibromyalgia.

For a moment there I could breathe again.  Perhaps that’s the explanation, then again maybe it’s not.  I wouldn’t know because my doctor hasn’t helped me get the necessary information I need about this illness.  Maybe it’s a peace of mind thing, but it would have helped me considerably to know this was a possibility.  Actually it would also explain why last year I had been losing weight without any adjustment to my diet or lifestyle.  I’m just hoping the scale tips shortly and I start losing again.

I know these are not life and death issues I need help from my doctor, but I do feel like fibro is a runaway train riding close to out of control.  The place I get my information from tends to be from other sufferers, and that’s great to have that but it feels like fibro is just happening and I have no say about it.  Not being able to access medication makes it harder.  It seems like I just have to let it happen to me.

I didn’t like it when I had to let depression happen to me for so long, and I don’t like this feeling that fibro has completely taken over my life.  I might have fibro, but fibro is not me.  I need to find a way of taking back the reins and I’d very much appreciate my doctor coming on board with this.

Except I think I’m dreaming.  I don’t think he wants me to be empowered.

“My own sex, I hope, will excuse me, if I treat them like rational creatures, instead of flattering their fascinating graces, and viewing them as if they were in a state of perpetual childhood, unable to stand alone.” 

―    Mary Wollstonecraft,    A Vindication of the Rights of Woman

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6 thoughts on “What My Doctor Won’t Tell Me

  1. John Richardson

    I think the key is to ask the right questions. With all the internet investigation I’m sure you’ve done I’m sure you’ll ask some good one. I think an unexplained weight gain in the absence of dietary changes or changes in physical exercise needs to be answered. I’d like to know for instance if it could be related to any medication you might be taking. If your doctor won’t answer your questions you may need to find another doctor. If you know any nurses that work in hospitals you might talk to them. I believe they generally know the good doctors, the mediocre doctors and the jerks. You might also inquire with the doctor if there are any tests than can be run that might help him arrive at a diagnosis. You might also ask him what he would do if he were in your situation. I think it’s generally a mistake to tell a doctor what he should do. Many have large egos and some seem to think they are gods. However, most of the doctors I’ve been around do seem ro really care about their patients. Be patient and if necessary find a better doctor. Medicine isn’t a science it’s a art. If you can develop a good relationship with the docor the chances of getting helpful answers should improve. By the way, why is he unwilling to give you any medications for your condition? If he he thinks that’s the main reason you’re there that might explain some of the problem.

    1. Thanks for your suggestions John. I ver much appreciate them. I guess I would like to go further in looking for a change in how doctors relate to their patients on the whole. Many people have told me that they also have similar difficulties with doctors and certainly my experience is that is it the same regardless of the doctor. It’s almost like doctors have forgotten that it is our body and that we should be empowered, with their help, to manage our illnesses. If they did things a little differently I am convinced it would benefit both us the patients and them. I guess it’s the idealist in me sneaking out again. 😉

  2. Cate… I was given a 5 minute examination, told I had fibro and then given a one page write out about the disease and sent home with the extra bit, “There are self help groups online.”

    And in my case it wasn’t fact. After several miserable years it turned out to be a medication I was on that was causing my aches and tiredness. That same medication also caused my BIG weight gain and water retention that has done permanent damage to the nerves in my hands and feet. So… if you are on ANY kind of meds – check the side effects! Don’t accept it being fibro until you’re sure there’s nothing else. I trusted, I accepted I had fibro, and as a result I lived with the side effects that have caused my body damage.

    And if your doctor consistently doesn’t answer you – find another doctor! I had to. I got so desperate I even took my husband in with me to the old doctor and he still didn’t answer my questions or listen to me. Hubby got so angry he dragged me off to another clinic and signed me up that same day. And I’m so glad he did as the new place LISTENED and LOOKED and they miraculously saw two different issues my old doctor had completely overlooked in his complacent mode of it all being fibto related. Oh and my “old” doctor was in his 30s, so don’t think I’m meaning he was doddery or old fashioned. Just useless! Yeah, I’m still mad at him, but I’m getting better and I’m going to keep getting better. Maybe one day I’ll go back and pull tongues at him when I’m really healthy – let him know how useless he really was. (joking ;-D )

    1. The situation you have been through is appalling Michelle, and what saddens me most is that similar stories are repeated over and over again. While some individual doctors are clearly better than others, I also thikn that there is an overall tendency to forget that our bodies are ours. They almost forget that the person exists. I’m sure part of it is time, but part of it is the collective thought that they are somehow better than their patients. Did I say that? Surely not. 😉

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