Only you know your own experience

A few days ago, I had a conversation with a medical professional that went something like this:

MP: So you’ve been feeling tired?
Chally: Yes, not as tired as I have been, but still pretty tired. I’ve been waking up at 5am[1. As I’m writing this, my body has happily decided to switch to 7-7.30am. Which is both good and ?!?!]. Not this weekend though.
MP: Why? Are you depressed?
C: No, I’m not. I’m not sure why that keeps happening.
MP: You don’t seem like you’re depressed. So do you have recurring thoughts when you wake up?
C: No. I just wake up, then I log on to the computer and check my emails to see what came in overnight. Do you think it could be the sunlight waking me up?
MP: No, the sun isn’t up that early. Do you have to check your emails?
C: No, I just do. I don’t want to leave the room and wake the household, so I just stay there and check my emails.
MP: So is it a compulsion?
C: No, I don’t have to check my emails, I just do it because I want to and that’s what’s there to do. It’s not a compulsion.
MP: Do you wash your hands a lot? Do you have lots of recurring thoughts?
C: No. I don’t have any symptoms of OCD.

That last moved the conversation on quickly.

I’m telling you this story so you know something very important. Medical professionals are people, with their own biases and experiences. Sometimes they will make mistakes and the wrong judgments. They will try to fit you into convenient boxes, tell you things about yourself that just aren’t true. Your trust isn’t always well placed when placed in authority. Remember that doctors aren’t the sole arbiters of experience. At the end of the day, only you know what’s going on for you; your experience of what you’re going through is valid.

9 thoughts on “Only you know your own experience

  1. I find this especially true when you already have a mental health problem – almost anything I went in for at one time had to be related to my having Bipolar Disorder. It took finding a very understanding GP to finally get a diagnosis for the severe pain I’d experienced for over a decade – far longer than my mental health issues.

    Your trust isn’t always well placed when placed in authority. Remember that doctors aren’t the sole arbiters of experience.

    I think a big problem with doctors is that too many people fear talking back to them. Just because someone is more educated, doesn’t mean they know everything, or know better than you when it comes to your own body.

  2. Trust is key and the ability to have a working relationship with your psychiatrist is crucial. Sometimes psychiatrists assume automatically that they have all the answers, but I’m the sort of person who does his research and can speak in all the terminology, too. One of the reasons I do it is to seem authoritative, and another is because I want to impress upon whomever is treating me that I want to be involved in the process, too.

    And since so much of psychiatry is pure guesswork to begin with, this further emphasizes why one ought to be one’s own advocate.
    .-= Comrade Kevin´s last blog ..In Defense of Antidepressants =-.

  3. Indeed. I think learning how to handle docs as consultants and not authority figures is a crucial coping skill. With acquired impairment, that project can be exceptionally frustrating when one is also I’ll or in pain.

  4. I don’t understand why doctors don’t listen. I’ve had such bad luck, I admittedly always bring another person with me to doctor’s appointments. Not so I have an advocate necessarily, but so that I can make sure it’s not just my perception that they treat me badly. Having someone to advocate for me helps too, though (I can get very upset and just clam up).

    My father told me, medical professionals need to learn to treat the patient they have – not the one they want. That means not always being able to easily pigeon hole (and subsequently medicate) every problem.

  5. Marie – I really like that last statement there, by your father. Very true.

    Chally – I’m glad it sounds like your doctor eventually dropped it. I have had doctors continue to pressure me to admit that something was true about me when I was insisting that I knew it not to be. It is so very very frustrating.

  6. Just the other day I had to be Very Firm in explaining to a doctor that, yes, the medication I’d been on made me fatigued and over-sleepy. Yes, I know it makes most people restless and insomniac. I am not most people. I am not suddenly going to change my story to match what you (who got a 30-second summary of my medical history two minutes ago) expect to see.

  7. Sorry if this is tangental, but this post totally reminded me of this
    I had this problem with my mother (who is a nurse, and used to be a childrens counselor) big time. She was convinced I was depressed and had to get on antidepressents now now now!
    I flat out refused, I wanted to see my counselor before figuring whether I was depressed or not, or trying to get on any new pills; and if so, whether I wanted to to try pills or try other coping methods.
    Which is when things got ugly. Apparently in moms eyes I had no say in the matter (I’m 22, I shudder to imagine trying to handle this 7-8 years ago). She said I had ruined my life (I had all F’s that semester, which she attributed to depression), said all I did was sit up in my room and mope and sleep all day, and other general nastiness (oh I could go on and on…), and when I broke down crying from her behavior or expressed the slightest amount of sadness at all or *anything*, she’d be like “see, see, that’s the depression talking!!!”, as if I was no longer me, and just a walking talking blob of depression. I had a fun couple weeks of crying into my pillow and wanting to scream.
    I’m temporarily able-bodied, so that was an oh-so-fun glimpse into the world of ableism and how it treats people as subhuman and like utter crap.

  8. Oh Princess_Backpack, that sounds awful. I’ll let you borrow my mom for a bit, I’m feeling generous.

    She is my advocate in the doctor’s office, especially when it comes to Dr. Ego, he of the 6 patients an hour (who are then billed the entire hour) on a good day. He mixes us up. Not too much – I ain’t preggers, and I’m young. But conversations that never happened are brought up in visits, and he just doesn’t keep all his notes with him. I’m sorry, I don’t remember what I tried for 2 months in 2007, check your records! (All my other docs carry the entire brick with them, except for Dr. Awesome, who has it on computer.) This doc has a new sheet each time – so when I ask, hey what was my weight last time, they can’t tell me.

    Anyways… because she is my mom, she won’t always talk for me, but I feel better knowing she’s there.

    She helped get my thyroid problem diagnosed (or on the road to diagnosis) because of her medical training. She was an EMT and can take your pulse. My pulse was all over the place. She was an EMT oh, before I was born, so she got a second opinion (“she’s on drugs,” said the helpful fireman), and then to the doctors.

    But even with all that, I still run into it with Dr. Ego, though not as much. Things haven’t changed in a while, and we’re used to each other somewhat, so he’s less likely to insist I have something I don’t and more likely to accept what I’m saying when I say the side effects did XYZ, even if that’s rare.

    And because he’s Dr. Ego, my mom’s friends and coworkers have gone to him/worked in the office – small town mindset FTW! – so we can get the straight dope.

  9. One more thing for me to be grateful for, even though I’m not happy with it.

    I don’t have an official diagnosis for the chronic pain that has dominated my life for the last (OMG) 4 years now. I’ve had diagnoses thrown about, but none have stuck, or “that can’t be the cause.”

    It bothers me because I feel like I’m doing something wrong when it comes to the school (my diagnosis for disability services is the thyroid one), but since the only thing close is “undiagnosed uterine pain” Dr Ego is much more open to new ideas, and less, “It’s this. Try this medication.” Repeat ad nauseum.

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