The “sick enough” dance

I keep feeling like I should put together a binder with all of my medical results and data. Then I am reminded that having such a binder means that many doctors will view me negatively as a drug seeker and they will refuse to give me treatment because I will be seen as a problem.

So I sit here and feel anxious and don’t follow through.

But I have spentĀ literally years going around in circles trying to get a Lorazepam prescription. I don’t want heavy drugs. I’m not looking for opioids. I deal with my chronic pain through a combination of white knuckling and pot. I’m not asking for heavy mood altering medications. I’m not asking for anything intense at all. I don’t even want a god damn daily dose. I want a mild anti-anxiety drug.

That now I am being told is the correct first line of treatment for my problems. After years of begging and being told no. I am so frustrated.

Now I have the gene testing proving that most psych medications aren’t going to work for me. I have the failed CPAP study in my history showing that I do not have severe sleep apnea and I am not a good candidate for that sort of therapy. It doesn’t solve my problem. It took so much begging to get this damn sleep study in the first place. Despite people telling me left and right that I should have had a sleep study years ago and they are so easy to get.

I was told to go home and take a Zyrtec.

It’s kind of like how I had to throw a kicking screaming tantrum before my last psychiatrist was willing to test me for ADHD. She said that she didn’t think that was important until she had gotten me stabilized on medications I didn’t want to be on. Even though knowing that piece of information changes how my treatment model should look.

I’m so frustrated.

Even though she was the one who did the gene test and she HAD PHYSICAL EVIDENCE IN FRONT OF HER that these medications were unlikely to be terribly effective for me… I have to try everything or I’m not really trying and I don’t care about getting better.

If I don’t give upĀ more years of my life to the misery of drug testing then obviously I don’t care about feeling better. Like, duh.

I have already been through years of drug testing. Literal actual years if you add up all the months put together because I did it in batches at different periods. And all the way I’ve been saying, “I don’t want drugs.”

If I put together a binder to document why I don’t want their drugs I will be labeled as a drug seeker and I will be denied the treatments that are appropriate to me. Until I get on the drugs they think I should be on. The drugs that will hurt me.

It’s kind of like how I get to 35 and talk about my sensory sensitivities and all the ways I struggle to conceptualize people and all the elaborate mechanisms and rituals I have created to pretend I’m normal and a well educated clinician says… “Yeah you are autistic.”

That would have been god damn useful to know more than 20 years ago.

But that requires looking at me and listening to me beyond “Wow you have big feelings let’s medicate the shit out of you until you are compliant and then I’ll talk to you about something else.”

No. That’s not acceptable. It’s not ok to say that I don’t deserve help until I am fully compliant with demands that hurt me. But that’s what doctors have effectively told me for many years. I find doctors so terrifying.

I’m really grateful the new OB asked a lot of questions and mentioned that there are mixed reviews of pot during pregnancy and when I could rattle off all the specifics of the studies she was off-handedly referencing she backed right off and said, “You probably know more than me then.” That’s what respect from a medical provider looks like. My current pain doctor isn’t willing to test me for EDS even though several people on my medical team want him to… but he is otherwise very responsive to my comments and requests and he is thrilled to support the medication plan I want. He says that I have a really good handle on medication stuff and he’s happy to hear that I am not looking for increased pain management through drugs. His entire job is helping people who are crumbling from pain cope. He thinks I’m doing great on that front.

The current OB office is poorer looking, the furniture and building look shabby. I feel like it has translated into the OB not having time to worry about stupid shit. She’s not stressed about my pot usage. When I can demonstrate that I have extensively researched the consequences she didn’t argue or push. That’s not something she has time to worry about. I didn’t feel pushed into deciding shit I don’t care about. I didn’t feel judged about my weight or relationship status. That was nice.

I think that medical providers are very important. I think that I have to deal with them. It is hard getting to the information in their brain that hides behind their innate prejudices.

Having a body sucks.

6 thoughts on “The “sick enough” dance

  1. Michelle

    Yeah.

    I resent among so many other things the number of other doctors tht refuse to look at my previous medical record. I take notes during visits because otherwise in most cases i might as well not go. And I bring notes but i have to bend over backwards and stroke egos and pretend to know less than i do otherwise im a hypochondriac no matter what tests say. The mental contortions they must go through to somehow explain everything as psychosomatic, and Im sure i get labelled as drug seeking even when im not seeking any drugs. Its so exhausting

    Reply
      1. Michelle

        Both of us run into doctor egoes a lot. The power they hold is so upsetting. Had a pretty traumatic experience my last time in the hospital where i refused a catheter, they kept insisting, and it was either check myself out when they thought I was dying or pee all over myself. So i chose the latter but it was utterly humiliating and has given me a few nightmares since.

        None of this has to be this way

        Reply

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