12:04pm July 5, 2015

Guess what?

And trust me, there are disabled people who are worse about this than even most nondisabled people, and it really pisses me off to no end. Because disabled people should know better. Doctors should know better too.

It is possible to have more than one thing going wrong with the same organ, body part, or body system, at one time.

Which means, the following, especially:

If you’ve heard me say that I have a particular diagnosis. And then you hear me talk about having a symptom that is not a part of that diagnosis. Then DO NOT condescendingly explain to me how that diagnosis doesn’t cause that symptom and therefore (whether said outright or implied) I probably don’t even really have that diagnosis at all.

And also:

If I try and explain things to you – and it will get complicated because I have more than one thing going on with most body parts, because I have more than one disease that affects multiple body systems – DO NOT do any of the following:

Try and tell me that my history of anxiety means in any way that I am somehow imagining this shit. Most of my diagnoses are backed with way more data than most people have to back their diagnoses, because people don’t believe me, because I have a developmental disability and a history of anxiety.
Tell me that my explanations are too long. My explanations are exactly as short as I can make them. If you didn’t give me glib one-liners that made it sound like I didn’t know what I was talking about, I wouldn’t feel the need to write longer explanations that show I do know what I’m talking about. It takes much fewer words to cut down a concept than to explain one. Also, if you have a habit of writing things far longer than I’ve ever been able to write (and that I struggle greatly to read), you’re going to piss me off if you accuse me of doing something wrong just because I can’t shorten my writing any more than you can yours. I do everything I can already, don’t guilt trip me about things I can’t do.
After all of this is over, accuse me of “medicalizing” the conversation. Invariably, you’re the one who asked me medical questions, or made medical pronouncements about me that I felt I needed to respond to in order to defend myself or my own ability to be accurate about myself. If you’re asking medical questions, or making medical pronouncements, there is nothing wrong with my making a response that at least partially involves medical stuff. (This gets even worse if, every time I say something that doesn’t agree with your heavily medicalized view of the topic, you tell me I’m wrong, about myself, and make condescending suggestions about what might be right.)

Here’s an example I got from a doctor:

Me: They think my mom has myasthenia gravis, so they’re considering that as a possible diagnosis for me too.

Doctor: You don’t have it. Myasthenia gravis causes specific muscle weakness. You have generalized weakness.

Me: Actually, I have both. In fact, I’m pretty sure i’ve told you about both. But I’m kind of shocked that you’d make a pronouncement like that without even asking me first about my symptoms. I see you for migraine headaches, not neuromuscular diseases. Why would I have told you every symptom I have that isn’t related to a headache, without your even asking?

Doctor: Well I’m still certain you don’t have it.

A couple years later, I got a single-fiber EMG that shows I definitively have myasthenia. Either myasthenia gravis or hereditary myasthenia (or now they know there’s also a hereditary form of myasthenia gravis just to make things more confusing). So much for his certainty.

The generalized weakness was from adrenal insufficiency, as far as we know. Which was also found out, absolutely, using objective testing.

Someone online then told me adrenal insufficiency is a “controversial diagnosis” and linked to a Quackwatch page. If the person had read the Quackwatch page properly, they’d have seen that it was under a section of the page clearly marked as something like “real diagnoses that quacks misuse for their own ends”, not a section of actually controversial diagnoses.

The controversial diagnosis is adrenal fatigue. Some quacks have started saying adrenal insufficiency instead of adrenal fatigue because adrenal insufficiency sounds more legit, because it is more legit. But they diagnose it in people who don’t actually have it, kind of like what’s happened to celiac disease and systemic candida infections, both of which really exist, but which quacks diagnose in people who don’t even remotely have them. All of which makes it harder for those of us who do have any of these things, to get taken seriously.

When your adrenal insufficiency is diagnosed by repeated blood cortisol and ACTH tests along with an ACTH stimulation test, then it’s real adrenal insufficiency. Period. Especially when the results are as flagrantly abnormal as mine were. It wasn’t just feeling a little tired now and then, it was getting ready to kill me, and it pisses me off that the quacks are hijacking my diagnosis to make money off people who also have real problems that aren’t getting diagnosed because the quack is too busy blaming things that don’t exist. Nobody wins in this situation but the quacks.

But back to the topic it’s like… I have a lot of breathing problems. I have bronchiectasis, asthma, recurring aspiration pneumonia, obstructive sleep apnea, central sleep apnea (and central apneas while I’m awake, sometimes, too), myasthenia-related breathing issues (related to muscle weakness), adrenal insufficiency-related breathing issues (also related to muscle weakness), etc.

So like…if I talk about some breathing issue that I have related to one of these things, it is not okay with me if you then lecture me about how I don’t have this other breathing issue because that one isn’t just like the thing I was describing.

Like, bronchiectasis, myasthenia, and adrenal insufficiency combined to make breathing feel like it took a whole lot of work, and a bipap helped. Sometimes the bipap saved my life because it helped me breathe deeper. My pulmonologist approved of me using the bipap as a makeshift noninvasive ventilator in those circumstances. I also have sleep apnea – both kinds – which is how I got the bipap to begin with. It helps the OSA in the usual way, and has a thing called AutoSV which treats the CSA, by detecting when I’m not breathing, shoving air into my lungs as hard as it can, and then doing this over and over until I either start breathing again or get woken up by the alarm going off saying I stopped breathing for too long. At any rate, I tried to explain the extra work breathing entails for me, and was basically told “Well central apnea doesn’t involve a feeling of extra work with breathing, that’s the whole problem.” Of course it doesn’t, but central apnea is not the only breathing problem I have, so I also have extra work with breathing, and I don’t understand why it’s difficult to understand that a person can have more than one disease affecting the same organs.

Like nobody gets on my case for having a stomach ulcer (which has a big open blood vessel right in the middle of it), GERD, and gastroparesis. They don’t say “Gastroparesis doesn’t cause stomach bleeding so you don’t have gastroparesis.” They understand that I have a bleeding ulcer and gastroparesis.

But I would honestly not be shocked if someone said something like that one day, because people have said that about my muscle problems (from a parkinsonlike movement disorder, myasthenia, and adrenal insufficiency, all three, not just one), and my breathing problems, so why not my stomach problems?

And of course there was that time that I had aspiration pneumonia, gastroparesis, severe delirium, myasthenia, and adrenal insufficiency all interacting with each other in ways that could have killed me and should have sent me to the ICU if I’d had a competent doctor – but the doctor literally said “You came in with pneumonia, and I’m not going to treat anything other than the pneumonia.” That was fun. The only good part was that I was out of it too much of the time to realize the danger I was in until it was over. And that’s not much of a good thing.

TL;DR: Lots of disabled people have multiple disabilities. This should no longer be a surprise to anyone. Yet both doctors and other disabled people sometimes act as if you can only have one disability or disease or whatever, or one main one, or one per organ, or something like that. Some disabled people even seem to have an attitude that goes something like “I have this rare condition, but everyone else who says they have it is probably mistaken so I should set them straight.” Which just… no, don’t interact with me like that, it’s not cool and it’s triggering to boot. Because I’ve literally almost died because of the “You can only have one thing at once” problem, or the “You don’t know what you’re saying about your own body, have you considered that it might just be an anxiety attack?” problem.