Last post Sun, Jul 27 2008 4:06 PM by Norma Carroll. 14 replies.
I have Asperger's Syndrome, Multiple Sclerosis, and a Genetic Disorder that affects me neurologically but mostly my GI system.
I have a problem with Doctors. They do not understand me and only allow 3-4 minutes for me to explain why I am there and I never am able to communicate to them what I need help with. I almost died in Houston from a bowel blockage because I could not get them to listen to me and only got home enema remedies and laxative prescriptions. I told them things that did not communicate the need but were obvious to me. I tried writing it down in a letter but they either never read them or the words I wrote down did not communicate any better. I am currently living in the DFW area of Texas.
Has anyone else had this problem and found a possible solution other than avoiding doctors or shooting them all??? (just joking about the shooting part - really, I swear! ;-)
Any thoughts are appreciated.
You may want to have a friend or relative who understands your conditions help you put together a written medical history, include dates, medications (old and current). Try to make it as complete as possible, while keeping it brief and to the point. Then, take this with you when seeing a new medical provider, and have them read it before you discuss your current complaints. They will likely resist this as it takes up what they view as their valuable time. Be polite, but firm, in insisting they read it. Remember, you are the customer...you pay their salary...they are there for you, not the other way around. Also, try to have someone who knows you and understands you and your conditions accompany you to see the doctor. This way if there are communication issues, that person may be able to help you communicate clearly with the doctor. Good luck to you.
Hi langkris!
I hope you are feeling better and completely understand your frustration with the constant RUSH doctors are in when they speak to anyone and everyone---I say this from both the perspective of being a patient and working with doctors on a daily basis at a children's hospital. In an ideal world, I'd like to think that a few thoughtful doctors would give you a few minutes more and show some patience but you'd probably benefit more from making changes in your behavior rather than theirs....It sounds like a great idea to plan out your message and questions as much as possible in advance. If that's not possible, muster up your best assertiveness and make it clear to them that you do have a couple really important questions or need them to understand some pertinent information..You're probably right that the doctors didn't read or didn't carefully read your letter. If that's the way you must communicate, you might be better sharing it with a kind nurse and seeing if he/she will be your ally in speaking with the doctor.
Thank you Kara
Unfortunately, I don't have anyone to go with me to a doctor but I like your idea about giving the letter to a nurse. I am working on HJS's suggestion of a 'medical biography' and trying to condense it to one page if possible (with meds and supplements on a separate page)
In ordinary situations, my expressive language is quite easily understood. If I have to be specific, I sometimes run into a problem but it is easily overcome. With Doctors though, I hear words literally and often miss the message conveyed but more importantly, I speak conceptually. (I call it painting pictures with words) I choose my words for the literal meaning the communicate (or should at any rate) and I use more words to describe the nuances of what I am trying to say. If I keep talking about stuff, they begin to think I am a hypochondriac (this is what happened in Houston)
I have tried not talking but just answering their questions and that is worse. Hopefully this 'medical biography' will work better. Maybe I can even fax it to them the day before?
Thank you for your thoughts and encouragement.
Kris
I'm a doctor in training, but I can completely sympathize with the urge to "shoot them all" at times.
Most doctors learned very little about autism and Aspergers in medical school. It isn't your job to re-educate them, but that might help some. In addition to writing down what you want to say about your symptoms (which I think is a very good idea and I wish more doctors were willing to read such letters) I would suggest telling them or writing down at the outset you sometimes have difficulty with medical language and taking things literally. Say that you have had difficult experiences in the past and you want to make certain you and the doctor both understand each other before you leave the office.
Faxing a letter the day ahead of time sounds like a great idea. You could send one page of medications, previous diagnoses, any hosptializations or surgeries that could go into your chart perminantly, and then another page with the questions and issues you want to address at that visit. I always bring a list of meds and diagnoses to my doctors visits, so that info doesn't get lost in translation. Also I don't want to waste time spelling 'levothyroxine" when I am at urgent care for a broken toe.
You could also ask if your doctor is willing to e-mail with patients. E-mailing doctors is not good for emergency symptoms but can be helpful to clarify any questions you have after you get home. Another suggestions, if you see specialists, is to ask them to mail you a copy of the letter they send to your regular doctor. That way you have a written record of what they said to refer to for next time.
There are a few of us out there who really like taking care of patients with Aspergers and autism - that's one of the main things I want to do when I finish my training. The other main thing I want to do is teach medical students about disability issues, so that all of us with various disabilities will get more aware care in the future.
Hi Nightengale,
Is there any chance you will be practicing in Texas?! Feel free to email me if you know anyone like you here. I did not know that specialists send letters back to my personal doctor. Thank you for telling me. I try to keep records for the next doctor but I will have to start getting those.
About 2 years ago, I actually quit going to doctors (just refused) because it was too emotionally devestating to be looked at like a hypochondriac after paying some of the little money I had to see them and being sent away still in pain with no hope of getting better. Then there was the fact that I had to go to a different doctor for each condition but none of them understood how each condition interacted with the other.
I had partial onset seizures years ago that were quickly brought under control with medication. I have been having nystagmus recently. This is what preceded the seizures years ago. I am afraid that if I don't go to a neurologist to find out what is changing, I may start having seizures again. I am crying right now at the idea of going to a doctor but I know intellectually that I need to. I will create the biography and a short paragraph, as short as I can make it, about Aspergers and how I communicate.
The advice, encouragement, and ideas I have received are a big boost to my spirit. Thank you also Nightengale for giving me a bit of hope that there are good doctors out there.
Everyone I know is in the Northeast for now, but I'm very early in my training. I am planning to work with kids, diagnosing them and helping them and their families through the school system. I don't know where yet - you'll have to ask me again in five years when I'm looking for a job.
Your frustrations are not unique to Aspergers. In college I interviewed a bunch of people who had gone to our student Health Center for symptoms that couldn't be seen from the outside. While the Health Center was good if people had a burn or a broken bone, people with pain or difficulty breathing often felt they were being brushed off with "it's just stress, dear." Even now when I go to a new doctor with symptoms that can't be measured on an X-ray or blood test, I worry I will not be taken seriously. The observation that specialists aren't always familiar with conditions outside their own field is also one I have experienced myself and hear from others. It often does fall to us, the patients, to take partial control of our own health care. Ideally it should be a partnership - and when I find a doctor who treats me like a partner, I stick with him or her as long as possible.
Dear HJS, KaraSwims and Nightengale... et al
Thank you for your support. It took 11 phone calls to find a nurse who would talk to me on the phone and take the biography by fax. I had to drive a long way to get to the office but I just returned and the doctor communicated with me asking specific questions about functioning (not asking 'what's wrong' but trying to help me verbalize) He had made notes in the margins on the letter that I faxed.
In the past 2 years I have not had a conversation with a doctor that was productive and made me feel 'better'. This morning I did.
I wanted to thank all of you for your advice and encouragement.
I wanted to let you know Nightengale that this worked well and maybe you can educate other doctors to be to request this from patients with NeuroCognitive disabilites. (or any other kind for that matter)
Thank you!
Your problems with doctors is universal. My best solution, and I do this for all appointments, is I write in a list order all my meds and what chages we may have made,my.
condition and then what questions i have. The doctors like it because they don;t have to waste time asking me whats already written. Many doctors put it right into a computer and while they are doing that you have extra talk time. I keep it to about three question.s I give the paper to the dr and say I wrote done my medication and hand it to them. Also if you have other info you expect the dr. to ask put that in there. Since doing this I get all my questions answered. And if the doctor hasn't answered them all I don;t move. I stay right there and ask or refer to it. The doctors always say thank you. This has been used with the Psychiatist, my internest and sleep/lung doctor. It saved alot of anguish. Put it in a list format. don;t write it out as paragraphs or they won't use it. I hope you will try this. Now my doctors expect a list from me
I am so happy you had a producitve doctors visit this morning! Hopefully this will be the first of many and a true partnership between you and your health care team!
HI, having an allie is helpful, but often it can be there day off, they got sick, don't work
there anymore, a number of things, the 1st idea is better, that you bring someone w/you.
This can be done even if you don't know anyone, try some of the local agencies. Some
like ILC, independent living centers, they can be helpful, and can help you w/formulating
that paper for the doctor, so you don't come off badly, I am quite good at ranting. I do
understand. I helped a girl friend, her doctor was like that, she got him to slow down.
I went to see him, and was quite intimidated, and needed her support in the room. He
then became more patient. I met a extremely good doctor, but she saw me in 5min. and
by the time I was leaving, I could think of the answer to her last question, [I am slow pro
cessing ,learning disabled, and thoughts are like a speed train] tuff, but I did refer her to
my girl friend, she started seeing this doctor, and got her to slow down and smell the roses.
I have another doctor that I see, and he got used to the idea, it takes me a few minutes to
be able to answer questions, and may have more questions unpon leaving, which in asking
the nurse, they can in turn ask the doctor, or have the doctor readdress the problems w/me.
To restate it again, ILC, is not the only agency, but is one of a few that can help and give
some assistance, at least get you connected with someone for that kind of support at the
doctor's office. Are you a senior, senior centers, have access to these supports, too. There
are other programs, agencies that are directly connected with any of your disabuilities that
can have a person go into the office with you a few times to help you get somethi;ng worked
out with your doctor, so you are both understood. He just needs to know. I know that just
being TEXAS, it can be a problem for a female, YOU are talking to Bakersfield, that is a
subset california town, much like arzona, and texas conbined, as it is often said, "good 'ole
boy country" and they often have run it that way, sister city is RUSSIA, so tell me about
justice, they don't even have that, I fondly call it 'lil russia, they had that kind of affect on
me.[custody issue] Juristiction, a simple one, they got all wrong, why because of disability.
SO TELL ME.... I understand. It's a man/man world, and we are here w/o equality.
Well, the flip side, of that coin, re: disabilities, we get it, and guys get to go to work.
That just as much a mess as well. Hope something works for you. good luck.
I have aspergers myself. I have never had trouble interacting with a doctor.
My best advice though is to do what someone in this thread earlier said. Get someone who knows your medical history explain it to the doctors
OR
State that you will only speak to a doctor who is familar with austism(if it's a hospital one will be there).
Have him act as your tranlator to the surgeon/doctor who is working on your symptom.
Ya, aspergers can be a difficult thing at times. Somehow I am able to have actual friends.
hi kris, it is nice to meet you. gee i felt bad when i read your story. i wish i lived near you i woud go with you and help you out. sounds like you got great advice here and i hope the next dr. visit is alot better for you. i didn't know about aspergers until i met joel. he has taught me alot about it and i have a special place in my heart for this disability because of him. i think it is sad that you get misundertood alot and if people knew about it they would be nicer to you and help you through your situation. i am glad that you are here and welcome!
Thank you Debbie
I appreciate your thoughts. I would most certainly take you along if you lived closer.
I seem to have the most problems because I am verbally fluent and my handicapp is much less apparent on the surface than it is in most others with the Dx of Aspergers; ergo, the doctors, with the Dx records in hand, often tell me 'this can't be true' or (sarcasticaly) 'this isn't right'. They don't/can't take the time to understand how I communicate and even the nice ones, like the one I found earlier this year, think I may hypochodria because I incessantly analyze and talk about my physical conditions. They don't seem to be able to comprehend that I MUST analyze & interpret every second of every day in order to function and 'fit' into the world.
I have never read, although I have looked extensively, about the effects of someone being abused as a child when they have Aspergers. I was abused and somewhat neglected as a child. For me I guess, Aspergers and my abuse created a situation where communication is necessary for protection only or at least for emotinal protection first and foremost. I learned to communicate and became very verbally fluent in order to protect myself. The mode communication I learned was what it took to either keep my abusers at bay or entice or gain the attention of my parent in order to get something I needed. I am never totally relaxed when I am trying to communicate with another person. It is always a chore and a job.
When I am talking to Doctors, I believe they see me 'trying to get something' out of the conversation and it gets interpreted wrong. I may never know what goes on in their heads anymore than they know what goes on in mine. I will persist however. I suppose that is simply what we do.
Thanks again Debbie. I kind voice makes a big difference to me.
