Hospitals and Doctors refusing to help me... Scary!

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I've been sick for over 2 and a half years. Major weight loss, pain, and chronic fatigue etc...

The past few months I've been to many doctors and the emergency room too many times to count.

How I have been treated is disgusting.

Of the few things I have heard:

"Autstic children are demons!"

"If it walks like a duck, talks like a duck it is a duck."

"Calling a spade a spade."

All the comments were by nurses that are suppose to help you.

My own primary care doctor wouldn't even look me in the eye so I had to change doctors.

I'm in so much pain and have no one to help me through it. I actaully am in more physical pain than I was a few months ago.

Where do I get treatment from people that will treat me like a human being?

What kind of hospital do you go to for such bad care? Is it in the U.S.?

Unfortunately, it seems common for autistic people to have problems with medical professionals when they main symptom they're reporting is pain. (It probably also applies to other hard-to-see symptoms like fatigue and weight loss.) Aparently we have some subtly different body language or figures of speech from how NTs act when they're in pain, so the doctors just don't believe us.

To a lesser degree, it's also a problem for women of any neurotype. So if you're an autistic woman, you're in trouble. My doctor thinks my debilitating migraines are from seasonal allergies, even though they are not seasonal. And when one of my medications was causing me debilitating abdominal pain, my doctor insisted that was one of the better options for that type of medication even though even though I'd previously been taking another one that didn't cause me pain.

Unfortunately, it seems like your options are to either keep doctor-shopping until you get one that'll take you seriously enough to agree to do whatever tests you need, or take an advocate with you. Someone who is assertive and has good verbal communication skills.

That is awful !
Where in the world is this happening?


Keep in mind that I am told that a lot of addicts come into the ER trying to get pain medication.

"The past few months I've been to many doctors and the emergency room too many times to count."

I am sorry you have had such distressing experiences. Going there consistently in the hope that they finally take you seriously will not change things; the reverse is more likely: the more often you go, the more they will discount the validity of your concerns.

There are several barriers to good care here: you are a woman; you are on the spectrum; and you may have been identified as someone who 'claims' to have chronic fatigue syndrome, a condition which I believe is real (probably an inflammatory process throughout the body) though many conventional doctors don't; they consider that claiming you have this is simply a symptom of psychological problems, an "hysterical" personality. Yes, I know that it sucks; you will not find help there.

You are going to have to look at alternatives: getting help from alternative systems like naturopaths, holistic practitioners etc; join online support groups (many women are dealing with same problems in the same context); study, research and do what you can to educate yourself about ways of dampening down inflammation.

I don't know where you live or if this option would be available to you, but in New Zealand it is possible to self-refer oneself for medical laboratory tests independently of doctors (you have to pay for service of course). So in your situation, I could self-refer for a blood test called "C-Reactive Protein" which is a measurement of inflammation in the body - CRP is a protein marker in the blood. So for people in your situation there is this option of self-testing, for a range of things, and if your tests come back all outside normal limits, then try to find a patient advocate (this is someone who knows how the medical system works and advocates for a patient in it) and represent to the system with the advocate and your test results; let the advocate do the talking.

I can't think of any other solutions for you, but if you keep doing the same thing, you will just get the same results, the only thing that will change is the intensity of their rude unkindness and dismissals of your concerns.

Hope that you will find the answers which help you resolve this. All the best. Put the past aside and move on, when you are able to.

This very interesting article places the issues of missed or misdiagnosis in the broader context. It also contains some suggestions (near the end) about interacting with ER personnel.

http://www.theglobeandmail.com/life/hea ... /?page=all

B19 is on sabbatical now but this news report relates to the topic of the thread

I-Team: 8-Year-Old's Hospital Stay Highlights State's Challenges In Autism Care