How Do You Get Firm With A Doctor?

[misstraci]

I've been reading a book that my friend got me from the thrift store called 'How Doctors Think?'. It has really clarified things I already knew as well as explained some new theories to me. The more I think about how I've been treated and how others have been treated in regards to our illness', etc. It makes me so angry. I personally have not been to the doctor in quite some time because I do not want to deal with the confrontation. I've had 95% negative experiences from both ER and specialists and I imagine I've seen roughly 20+ doctors over the past two and half years. Those are some bad percentages if you ask me!!!

I understand why we are looked at as crazy, I mean, until they invent the machine that hooks to me and him (doctor), he'll never be able to feel what I feel and believe me. He's looking at me and sees no obvious blood or distress, I must be fine, right?! I'm a thin, young female and I've heard it all. Mostly anorexia, depression, anxiety, post partum, hyperventalation. It's very demeaning and frustrating. I feel insulted at the comments and questions that are given to me. It even said in the book how doctors can look at a supposively homeless looking man who smells of alcohol and automatically assume he is drunk, let him sleep it off and he'll be fine and that is true some of the time but what about those other times that it's not. They are being sterotypical just like everyone else and those mistakes and assumptions are costing people their lives!

I've been feeling terrible here lately and I want to make an appointment with a new doctor who've I've never seen or spoken to but I want to go in strong and with my questions as well as comebacks. I'm normally very quiet and meek because I feel inferior to the doctor since he's been to 50yrs of school and makes more money in a year than i probably make in 10. SO, my long story short is, How do you guys speak to the doctor so that he takes you seriously? and when he says nothing is wrong or we've done all these tests, there is nothing else... what do you say? How do you push to get what you want, etc etc?

Thanks as always!!!

[arizona girl]

Well most of my doctors are female now and most of them being women are better at getting women and listening. Not all be most.

I also make notes and questions to ask the doctor, even writing the note to the doctor and giving that to them first. That keeps us all on track. Though even with that not all topics get covered. I also bring any documented labs or records I have that prove that something is wrong. I also bring abstracts or articles from published doctors that are well known in their field, that will help point them in the direction I want to look into.

I have also found that some of my nurse practioners are better then some of the doctors they work for. Also before making an appointment with a new doctor, I will call and ask if they are familiar with and treat the condition I'm looking into.

If you are meek or get tongue tied like me the pre written note to the doctor, with bullets on the issues I want to address really helps.

[ddschool]

Thank you for this topic!

I've have to get stern w/ quite a few docs lately b/c they don't take me seriously, or just want to pawn me off on someone else. I'm a nurse, and I've had a low grade fever for over 6 months & no one will do anything about it. If I was a patient in the hosp, this would not be acceptable-they would treat it somehow, but b/c I'm on the " outside" they really don't care.

My advise is read as much as you can, go in the office w/ info, and ask if you can try things if they don't offer it-you are your patient advocate, and you have to stand up for yourself. Don't be afraid to get second & third opinions also. Unfortunately, I've come to the conclusion that they are going to get paid whether they help us or not, so I feel they are trying to do the bare minimum.

[Lemons2lemonade]

I've learned that complaining about symptoms doesn't get me anywhere. Really all they can do is adjust your medication. If you go in and tell them that you would like them to monitor new medication options they are much more helpful.

[jangle]

Don't get firm with a doctor. If a doctor is putting you in a position where you need to "get firm" then chances are they're not worth continuing to see. A doctor should be on your side, willing to fight for you, and console you when times get rough. If the doctor is embattled or derogatory towards you, then you need to see another doctor.

[Relax86]

I don't have enough Dr's who are fighting for answers for me. I have a very supportive PCP who sees alot of kids with POTS who outgrow with time and some fludro. He has been supportive but wants to put me on their clinical pathway and expect the same results. I'm not sure he's right or wrong. My cardio says he has 4 other pts like me....he has been nice and also acknowledges how bad he knows I feel. But doesn't know how to proceed or where to send me. The other 4 pts he says all are built like me, and look like me with type A personalities - I don't want to read too much into this but it feels mildly judgmental. I'm an outpatient Physical Therapist and I work really hard looking for clinical pathways for my pts that need care. I research, I try harder, I try other options that aren't the typical norms... and it seems like I'm blown away that they Doc's in my circle have done nothing of the sort for me. I agree with Jangle and my plan is continue to look for providers who want to work to find help for me. I will keep the nice guys in my circle but I need a specialist with some answers - if they are even out there.

[yogini]

I think there are a few important things you can do to be successful with drs. The first is to reasearch you dr and try to go to one familiar with POTS. Also, be able to explain your symptoms/history clearly. Maybe write it out for yourself so you know what to say. And believe in yourself. Know that you know more than most drs about this. So if a dr tells you it's anxiety, THEY are wrong, not you. I also I think it helps to bring a friend or family member along - drs are more reluctant to be nasty in front of other people. If that friend is in the medical profession, that is even better.

Even after doing all of these things, know that successful drs appointments are few and far between. Our system is set up to whiz people in and out of drs offices as fast as possible. Drs don't focus on particular patients and don't know enough about POTS, . Our lack of care is not bc of anything that we patients are doing wrong.

[misstraci]

Thank you all for the suggestions and advice! I really appreciate it.

Jangle.... you're right and this is why I've been to so many different doctors already.

[Katybug]

misstraci,

I get your frustration. I refused to go to any doctor for 2 1/2 years because after seeing 24 docs in 1 1/2 years...they weren't helping me and frankly making me mad which stressed me out and made me feel worse. But, then, I realized no one was going to advocate for me, but me. So, I got back on the proverbial horse. I now have a core set of docs around me that are really caring and trying to get me better: my PCP, a cardio, a neuro, and an immuno. I am currently trying to add a good rheumy and a geneticist to my team. BUT, it took me a few tries with the cardio and the neuro this time around to get it right. Once, I had them, they were able to give me really good referrals. I flat out said to the cardio, "I am not an 'in the box' patient, but, I am sick and I want to know if you will help me figure this out. I don't expect you to tell me what's wrong with me today, but please just tell me if you plan on helping me." She was great...and she made a commitment to help me. She is actually the one who found the POTS.

I think everyone has given you great advise, but, if you enjoy reading and would like to feel more confident about having conversations that "get you what you want" (all conversations, not just doctors), you can try a book called "Crucial Conversations" (don't remember author) (not to be confused with "Crucial Confrontations" which is another book by the same author.) It takes you through the appropriate steps on how to plan and frame your conversations with another person so that you can get what you want without the other person on the defensive.

Good luck on the doctor hunt.

Katie

[jem15]

I still struggle with this issue, though I do all the things you're "supposed" to do, writing stuff down, doing your own research, being your own advocate, being straight forward, though polite, in asking doctors what i need/want from them and if they can/can't help me with that... etc..etc...I basically "interview" doctors before choosing one to put on my "team".. and though I've at least found nicer ones now, who listen, and are willing to take my case, and at least fill out disability...in my 17yrs being sick I have still never met any who are really fighting for me, or really trying to help me, thinking outside the box, or do anything in between my appts with them. It's super frustrating, cause it's what we so desperately need and I have even given these desperate plea type speeches to them, and they can look at me with sad eyes, but still nothing.. and i've looked everywhere! I'm beginning to think it doesn't exist much in real life, at least not in my area, only on TV. Of course I still try, but right now it seems best I can get is just someone who's not derogatory and listens.. And some of the doctors have honestly even told me, I know as much as them, if not more. It's crazy.

[misstraci]

Katie, thank you! I'm glad that you have good and helpful doctors for you now. You deserve it. I will look into that book because i'm sure it'd be helpful in all areas, not just doctors.

Caterpilly, I'm sorry! I'm sad for you too that no one wants to get in there and help and dig and figure it out. That's how i feel and it stinks! I hate being treated dumb, unimportant, or like 'NEXT'..... meaning , get this lady out of my office, check her off the list, next patient please.