Talking to (and Understanding) Doctors
When a child has the symptoms typical of Chronic Fatigue Syndrome, or Neurally Mediated Hypotension, or Fibromyalgia, or any other fatiguing illness, the doctor often doesn't get it. He tells you that all the tests are "normal," or that he "can't find anything wrong" and he seems to think that takes care of things. Go back home, send the kid back to school, and forget it--if you don't think about it, it won't be there. That's what the message seems to be.
Even if your primary doctor doesn't do this, the specialists (what British people call "consultants') may do it. It really is hard to get good help these days.
How should you handle this?
To start, consider how things look to the doctor. Your child looks healthy--that's one of the evils of these illnesses, they don't show. In addition his standard tests detect nothing wrong. His physical exam doesn't show anything either. Maybe there's a little reddening of the throat--a viral sort of thing he supposes. It will go away by itself. Maybe some lymph nodes are big and tender. Those kinds of thing come and go too, he sees it all the time. Reflexes are good, even brisk. There's really nothing to go on but what you say.
And he probably doesn't know you very well. In the old days (not so long ago either) that might have been different, but as things are now doctors spend five to ten minutes with each patient and little of that time is spent in any kind of personal discussion, the kind of talk by which people get to know, like, and understand each other. So here he is with a stranger and her child. The child has nothing demonstrably wrong with her, but she has a lot of complaints. So it makes sense to think maybe she's just a complainer, or maybe her mother has a miserable marriage and the child is expression illness in sympathy, or be it's school stress coming out in physical complaints, or maybe it's depression. How would he know, he's not a psychiatrist!
Of course you tell him that it isn't any of these things but what's he got to go on? People do lie about that kind of stuff and he knows even less about you than he does about your child.
What this means is that you have to find ways to be credible, and you have to do an education job.
It's also important to realize that physicians are set up to deal with one thing at a time. You go in with a sore throat, a boil, a skin growth, a cough, a fever. Those to the practitioner are the presenting complaint, which they investigate, try to diagnose, and try to treat-- in ten minutes or less! When you go in with a sick and worn out kind what you present him with is a a bunch of apparently unrelated complaints. His training tells him to pick just one of these and try to deal with it--an approach will typically fails with people who have these kinds of illness.
An unpleasant but true and important aspect of the situation is that understand doctors and their employers tend to lose money on patients with complex or hard-to-treat chronic illnesses. Visits tend to be longer than average, enormous amounts of time are required to look up information, find resources, make referrals, and do required paperwork. Insurance companies and HMOs don't pay for that kind of thing, so doctors who take the time needed to treat chronic illness effectively do so at a personal financial sacrifice.
And quite a few doctors don't want to make that sacrifice.
So what do you do?
Easy. Be a boy scout (even if you're a female). Be prepared.
Be prepared for ignorance, indifference, hostility, and arrogance.
Dress carefully. You can be casual but don't be sloppy or unkempt. Doctors are like anyone else, they judge people's character by how they look. If you dress as you would for a business appointment, you are more likely to be taken seriously.
Be well informed. Know a lot about your illness. If you can find authoritative writings (especially by other doctors), take them with you and give them to him. Request he read them, and be politely insistent about that.
Document. CFS and related conditions are illnesses that limit activity. Take notes about how long your child can stand up, sit up, walk, do written work, read, or go without resting. Make it plain that these limitations keep your child from participating in enjoyable leisure activities. It's not just that she can't go to school ("school phobia" he's thinking) but that she can't spend more than half an hour with her friends, can't play soccer (which she loves), can't even sit at the dinning room table long enough for the family dinner. Or it's that she does go to school but has to sleep for six hours after she gets home--or else she can't think clearly enough to do her homework. Write these things down in a clear and simple way, make a copy, and give it to the doctor. Ask him to read it. Don't let him give it back to you--ask him to keep it as a record. And make sure you keep your copy too.
Be Cooperative. If he wants you to try something, try it, even if you know it won't work. If he wants you to see a counselor or a psychiatrist, do so. If he wants you to see some specialist you think is irrelevant, go see the specialist. Take your basic written information on your illness with you and ask the specialist or the psychiatrist to read it then and there.
Be Politely and Firmly Persistent. Just keep coming back with your documentation and telling him that the problems are still there.
Choose. If he's really not interested, seems too stupid to learn anything, or really gets hostile, get another doctor.
I can't promise this advice will produce a smooth path to medical understanding, but it will at least give you a good chance at it..