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???

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marandarussell

Hi! I am an artist, author, and blogger who also happens to have Asperger’s Syndrome. I have won several awards and honors for my writings and artwork. I suffer from a few severe mental illness and chronic pain conditions (Depression, Anxiety, PTSD, Fibromyalgia, CFS/ME, Ehlers Danlos, Degenerative Disc Disease, etc.), which greatly affects my life and makes me want to advocate for others going through similar things. Other interests of mine include reading, writing, drawing, watching cartoons and movies, collecting toys, hanging out with my family, and annoying my 3 cats.

23 thoughts on “Why Doctors Frustrate Me – Trying to Get Testing Done”

  2. Private providers and healthcare insurances seem the reasons why is so difficult to get a test done, if the test is required by the patient and it is not on the ” cheap-typical tests” list. Basically, if you live in a country with a private healthcare system, doctors are not their own bosses and they have to keep costs down for their office and for healthcare insurances. Thus, expensive tests and unique tests are a “no-no!”

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  3. I go through this with my son. “Doctors” and their schooling and x amount of years experience have yet to impress me over the simplest of things. I admit I don’t think very highly of them. I learn more from google..

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      1. Lol! But we’re idiots because we didn’t pay untold amounts of dollars to go to a school that teaches a science and a theory….

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    1. I can’t put my legs behind my head anymore. I can still easily get my feet up to my ears though. Don’t know if that would help lol. I can do the prayer position behind my back, turn my ankles at about a 90 degree angle to the side, and sit with my legs bent backwards to the side, which makes some other people cringe lol.

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      1. You may have to whip out all those party tricks in your quest for testing. Being able to stack all your fingers on top of each other also creates that “eek” effect. Then never do any of that again after proper diagnosis. They all teach the EDS body that hyperextending is okay, and we have to learn through PT to stop that! 😉

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      5. I don’t do exactly that, but I find it fun to put all my fingers in a straight vertical pile, one tip on top of the other. Don’t know if that is normal or not. According to the sites I’ve read about hypermobility, I still have a hypermobile pencil/pen grip. I don’t know how people write or draw with the way they say you are supposed to grip a writing implement!

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  6. I know it isn’t good to do that stuff, because I often notice if I do, that I get achy and stiff afterwards. I always thought it was weird though that with all the pain, stiffness, muscle issues, and joint pain that I was still so flexible in many ways even though I didn’t exercise or stretch much at all anymore.

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  7. On the beighton score I can do all, except it is painful to touch my right thumb to my forearm anymore (likely due to injuries and stiffness), so I typically don’t, and I can do the leaning over with palms on the floor thing, but do have to bend my knees slightly because my hamstrings have become so tight from years of severe plantar fasciitis. I could do it easily as a kid though.

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  9. More power to you for continuing to push. Sadly those conditions such as Asbergers and Ehlers-Danlos Syndrome are among those that doctors just don’t seem prepared to even diagnose outside of childhood.And if they can, sometimes they don’t see the point of it. Speaking from personal experience. Wish we could move the whole field away from simply treating the symptoms.

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