How Can You Tell if You're Hallucinating?

[mamselle]

I hate to have to say it, and may even get flamed for it, but I'll say it anyway.

Females usually DO have to repeat things two or three (or ten or twenty) times before they're listened to/taken seriously/heeded.

Especially if the one who's supposed to be listening is a) empowered over you, b) male, or c) both.

It's one of the most maddening things in the world, but that's the way it is.

Keep at it....and good for you for going and following through.

M.

[downer]

I really liked Sana Goldberg's How to Be a Patient. It recommends basically being a pain in the ass with doctors until you get the care you need. She talks especially about how doctors ignore or undertreat some groups, like women.

[smallcleanrat]

If you do want to go after a proper differential diagnosis-- Does your university or one nearby have a clinical psych PhD program? They will have a training clinic where well-supervised PhD candidates who are trained in rigorous assessment can do a diagnostic interview correctly. Usually, they have a sliding scale fee structure and discounted or even free services for students.

I hadn't thought about this before. I checked the website for the one at my university; even with a student discount it looks like it would still be several hundred dollars. I'll keep the possibility in mind though. I think there are a lot of ways I present differently from ten years ago. Results of a thorough assessment might be different as well.

I hate to have to say it, and may even get flamed for it, but I'll say it anyway.

Females usually DO have to repeat things two or three (or ten or twenty) times before they're listened to/taken seriously/heeded.

Especially if the one who's supposed to be listening is a) empowered over you, b) male, or c) both.

It's one of the most maddening things in the world, but that's the way it is.

Keep at it....and good for you for going and following through.

M.

My SO was outraged and astounded at how often I was treated dismissively by a doctor. There have been times he's accompanied me to appointments when I've felt too sick and exhausted to be assertive, and it does seem to help get me more attention. Now every time I come home discouraged about something he asks, "Do you need me to yell at someone? Because, if it gets you what you need, I certainly will."

The last neurologist I saw didn't look at me once during my entire (5-minute) appointment. I had to wait three months to get in to see him, and the bus ride was 2 hours one way. To be dismissed after 5 minutes and told there was nothing to be done was devastating. At the time, I was unemployed, bedridden or curled up on the floor more days than not, and not at all certain I had any future worth striving for. I lay on a bench outside the medical center in utter despair. Took a while to gather up the will and energy to get up and bus home.

I think it doesn't help that so many of my issues are literally "in my head" (i.e. neurological or psychiatric).

[mythbuster]

I have two suggestions. First, have SO start coming to the appointments with you. He can be your back up advocate, even if all he does is glower. He sounds like a keeper to me.
  Second, start a written document of all your symptoms. When I had some medical issues last year I wrote my PCP a three page typed letter detailing my issues. The doctor called me with a near immediate appointment. At the appointment, the doctor had my letter as a print out and we went through it point by point. It was probably the best doctors appointment I've ever had in terms of being thorough.
  I think you are dealing with the trifecta thank leads to doctors ignoring you. Being female, being a scientist, and having symptoms that require some empathy. I can't tell you the number of MDs who are scared to diagnose me with anything once they learn that my PhD is in a medically oriented field.
  Hang in there and keep talking with us. We are on your side!

[smallcleanrat]

I have two suggestions. First, have SO start coming to the appointments with you. He can be your back up advocate, even if all he does is glower. He sounds like a keeper to me.
  Second, start a written document of all your symptoms. When I had some medical issues last year I wrote my PCP a three page typed letter detailing my issues. The doctor called me with a near immediate appointment. At the appointment, the doctor had my letter as a print out and we went through it point by point. It was probably the best doctors appointment I've ever had in terms of being thorough.
  I think you are dealing with the trifecta thank leads to doctors ignoring you. Being female, being a scientist, and having symptoms that require some empathy. I can't tell you the number of MDs who are scared to diagnose me with anything once they learn that my PhD is in a medically oriented field.
  Hang in there and keep talking with us. We are on your side!

Thanks, mythbuster.

SO comes with me whenever I feel I especially need support, but it's not practical for him to come with me to every appointment because of his work schedule. Days he has come with me, he's used his PTO days. But it's been nice to know I've got backup if I need it.

I did try bringing a document of symptoms with me to doctor visits, since symptoms would change on me and I was getting so many different responses from different doctors. Most would take the paper, give it a quick glance (quick enough that I doubt they actually read much), then put it aside and never refer to it again. I liked this psychiatrist because he actually read what I had written (even said it was very helpful and a good idea) and seemed to be paying attention to what I was telling him when I first met with him.

I never even considered that being a scientist would affect the way I was treated by a doctor. Why would that be?

[mamselle]

Some wouldn't.

The orthopedist I've seen for my foot seems to enjoy showing me my x-rays and discussing the injuries in proper anatomical terminology. (Our dance major classes included anatomy/kinesiology, and I had an exigent 10th grade biology teacher who made us memorize Grey's Anatomy--the book, the TV show hadn't come out then...) I can ask him questions and get straight, bemused, intelligent, respectful answers, which I'm enjoying (foot issues aside).

But others...the ones that are maybe less self-assured or have their own control issues....They're afraid you might either know more, or have more recent info, about their own specialty, or that you might start talking with them from the clinical/lab side of things, or questioning them about things they can't answer, instead of letting them "be the doctor."

Or some, whether burnt-out, operating at the Peter-principle-edges of their own competence, or lazy, are just past registering anything much beyond the basics.

They're so overwhelmed you could say, "While my foot was in the cast, it turned orange with pink stripes, which I thought was kind of cool," and they'd say, "Hmmmm....really?" and keep going.

MD's are people, they're not really gods or goddesses, and their occupation has some odd, unexpected Achilles' heels. (Sorry, I seem to keep talking about pedal anatomy...) I've worked at two different hospitals and several pharmas with some really excellent ones, and some weird, awful ones.

But, yeah, that can be one of their blind spots/tone deaf ranges/hot buttons.

M.

ETA: ...and +1/Chime to Mythbuster! (Especially about SO being a keeper!)