Why Doctors Frustrate Me – Trying to Get Testing Done

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I want to begin this post by sharing a horrible dream I had last night. I was sitting in row G of a live outdoor show (my dreams are pretty specific sometimes), when someone behind me threw up all over my head. It was disgusting! I still remember the smell and feel of the vomit as it trickled down my face and hair. Ick! By the way, how do you “smell” things in a dream? I don’t know, but I sure did!

Ok, now that I got that off my chest, on to the main topic of this post. I am frustrated with doctors. Why? Because time and time again, I have had to fight to get testing that I feel is important, because many doctors tend to think I am just being a hypochondriac or overly anxious when I tell them I suspect a particular diagnosis.

However, time and time again, I have been proven RIGHT when I finally got the testing. C Diff, MRSA, medication allergies, asthma, CFS, fibromyalgia, costochondritis, pancreatitis, Aspergers, bipolar…all of these are conditions I highly suspected long before I actually got diagnosed, and yet, I had to fight to even get them checked out because doctors thought I was just being paranoid.

The most recent testing I am fighting for is Ehlers Danlos (EDS). I meet the major and most of the minor criteria for the condition, but have been fighting to even get a referral for testing. EDS is often comorbid with high-functioning autism, so that is what first made me interested in the condition. I am positive I score at least 6 or 7 out of 9 on the Beighton Score (higher on the Brighton Score).

I guess I can sum up this post in one sentence: Why is it so damn hard to get a simple test done???

About People Who Self-Diagnose as Autistic

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Hello everyone! So today I’m going to talk about a subject that might tick off some people, especially those who tend to hang out on Tumblr a lot. I’ve noticed that it has almost become fashionable or a cause for pride for people to research mental health or psychological conditions (or in this case a neurological condition) and then decide for themselves that they suffer from said condition. This worries me for several reasons which I will discuss here.

#1 – What if you are wrong? Put simply, many psychological conditions share almost the exact same symptoms. Even among professionals, misdiagnosis is an enormous problem in many people getting the help they need. I have no issue with people saying that they suspect that they may have autism. I just wish people wouldn’t say they have it for sure unless they have been adequately evaluated and diagnosed. I do understand that in the US at least, it can be an issue getting diagnosed because health insurance is a crap-shoot, and many people don’t even have access to regular health care, let alone psychological healthcare, but if you don’t know for sure whether you have autism, bipolar, another mood disorder, borderline, sensory integration disorder, or one of the other many conditions often misdiagnosed as autism, please don’t make definite claims.

#2 – You can actually do damage to the Aspergers or autism community. You may not think of it that way, but if you DO NOT actually have autism and yet go around claiming you do, you are likely feeding into certain stereotypes about autism that are already a problem or you are inaccurately portraying what it is like to be autistic in this world. Some of us who live with autism every single day can tend to get a little annoyed about that. Although some in the community have no issue with self-diagnosis, we are ALL different and some of us don’t like the whole self-diagnosis phenomena.

#3 – People who self-diagnose sort of have a reputation for being attention seekers. I do not think this is the case all the time, like I said, I think some of it has to do with lack of adequate healthcare, but I do believe there are a few at least that are doing it for the attention and that is really irritating.

#4 – Unfortunately, some people already see high functioning autism as a BS diagnosis, and when they see people just randomly deciding they have it without any kind of actual medical oversight, it tends to feed that destructive belief. Yes, they are the assholes to feel that way in the first place, but we don’t want to feed the assholes any more than we want to feed the trolls.

As a final note, I want to reiterate that I do not condemn people thinking or suspecting they have autism, just claiming an actual diagnosis without one. If you do suspect you may be autistic, doctors that diagnose adults can be hard to find, but they CAN be found, so don’t give up. It took me quite a while to find one who would test adults, and I only found him by contacting a professor at a local college who specializes in autism research and asking him if he knew any doctors who diagnose adults, so that might be a way for you to seek out a diagnosis as well.

Also, there are self-assessments made by professionals that can be useful in deciding if you might have autism, but they are NOT meant to be diagnostic material in themselves. However, they can help a great deal in figuring out if you might be autistic and are often used by professional doctors to assist in diagnostic criteria, so using them can be helpful in narrowing down whether you display autistic symptoms or not.

New YouTube video – how I got my Asperger’s Diagnosis (and how it made me feel)

From the feedback I have gotten from those who watch my YouTube videos, it seems that people are most interested in hearing more about my experiences with Asperger’s Syndrome/high-functioning autism, so I am going to try to focus on that some. I figured the logical first step would be a video talking about how I got my diagnosis of Asperger’s Syndrome and how that affected me. So here you go…