Caregiving: The Diagnosis

After an interesting weekend, I’ve gone back and forth on what to cover this week. A pounding headache seems to have done the trick and while I’ve been nursing the aforementioned headache with peppermint tea and painkillers, I’ve been thinking about The Diagnosis.

Mr. Juniper has had his diagnosis for almost five years. He has been ill for considerably longer. It’s not unusual to hear people speak of it taking years to get the correct diagnosis. It took around an hour for Mr. Juniper to get the correct diagnosis. What took years was finding a good psychiatrist. One who didn’t have harebrained jerk among their qualifications. A good doctor may not know what the correct diagnosis is, but they should know what doesn’t fit and go about finding someone who does know what’s happening.

This shouldn’t come as a great surprise, but up until Mr. Juniper had the diagnosis he has now, he was misdiagnosed. In both physical and mental health, misdiagnosis can be harmful. In some cases it can be dangerous, even life-threatening. Misdiagnosis often leads to the wrong treatment. For mental illnesses (indeed, as with physical illnesses) the wrong medication can be a Very Bad Thing. Mr. Juniper’s misdiagnosis meant he was prescribed medication which contributed significantly to him doing things that were, shall we say, “detrimental” to his general health. This has led to subsequent appalled psychiatrists doing the polite version of “What the fuck?” while going over Mr. Juniper’s history.

A diagnosis doesn’t bring entirely good tidings, however. Some diagnoses suffer from incredible stigma (at times, from professionals, as well as from the public in general). This can mean the difference between sympathy while talking about mental illness to condemnation while talking about X diagnosis.

A diagnosis also means having something to work from. This is both a blessing and a curse. It means having something to put into a search engine, but it also means having to stomach all that comes with those results. It is usually far from pretty. Information on illnesses, depending on the source, is often honest to a degree that’s painful to read. Personally, I find it most heart-breaking when I see the mortality rate for Mr. Juniper’s condition (oh yes, mental illnesses have mortality rates, too).

When I see the information like diagnostic criteria, treatment and recovery rates for Mr. Juniper’s condition, I see my husband laid out in bullet points. There’s the balance of knowing his diagnosis didn’t require every single criteria being met but looking at those bullet points, I can’t deny the ones which have “Mr. Juniper” written all over them. For Mr. Juniper there is the relief of validation for what he’s been going through. It’s real. For me, I’m still not sure. I married him, not his mental illness and yet someone’s written all about what goes into the nights I’d rather forget.

Then there’s usually a small paragraph buried in amongst all the other information on a diagnosis. The one about recovery. Sometimes, they give a percentage figure. Sometimes, an indication which could be better worded as, “We don’t have a clue. So good fucking luck.” To be fair, they have a point. There can be indicators as to what may favour recovery, but who’s to say which people are going to find the right medication, right therapy, right support…right everything. Sometimes, so much has happened that the best that can be asked is if things can get better. It’s what we focus on: simply getting better. Then there’s the time scale it all takes. One way to guarantee making a psychiatrist squirm? Ask them how long recovery takes. For pure amusement, however, ask them about sex. I couldn’t help but smile while Mr. Juniper and his psychiatrist were suppressing grins over the suggestion of “Persevering.”

Ultimately, the right diagnosis is usually a good thing. It acts as a gateway, among other things. Sometimes there’s information that’s hard to stomach, like the risk of turning into a unicorn after hitting thirty. I mean, that’s only next year for Mr. Juniper. But that’s part of a diagnosis, being able to know what risks are. To simply know more. A diagnosis can be an oasis after the mirages.

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Juniper

Rarely to be found without herbal tea nearby. Team Unicorn. Often in pyjamas. Also: TEAM KATNISS!

14 thoughts on “Caregiving: The Diagnosis”

  1. I know four people with bipolar, and all of them were misdiagnosed with depression first. It very nearly cost a dear friend of mine her life several times but now she is medicated correctly, has a great therapist, and is living a good life. I think that the medical community (or perhaps the diagnosis criteria) are failing people who fall outside of the standard diagnosis of depression and anxiety. And I think there generally needs to be change in that area overall because even depression symptoms can be different in different people (my clinical depression symptoms were often really really physical: severe insomnia, horrible social anxiety which made my heart race, sudden inexplicable crying which is different than sadness, lethargy, a sore body, and excessive sleeping).

    1. Am glad to hear your friends have all found the right diagnosis for them in the end. It really can be dangerous to be misdiagnosed but I think the fault tends to lie significantly more in the people making the diagnosis than the criteria themselves.

  2. I got really lucky in that I only had to see two psychiatrists before finding a good, competent one capable of finding the right diagnosis. The first one was not only in the ‘harebrained jerk’ category, he made me feel like a damn science experiment instead of a human being.

    The point about diagnoses and stigma and mental illness being misunderstood is a really good one. Has anyone on here really expllored that yet? Because I get that crap all the time; I outed myself as being bipolar to a friend, who promptly replied ‘well I’m glad I get to see the ‘nice’ you and not the ‘bitchy’ you’.

    …that’s not how it works, jerkface.

      1. Ugh, yes. It’s a pretty big contributing factor to my not letting anyone IRL within a mile of knowing about my diagnosis/treatment. My mom only knows about it because we live in the same house and someone has to know in case I’m incapacitated. It’s seriously limiting my willingness to reach out and get support, because I’m constantly afraid I’ll hear stuff like that from people.

          1. This has no scientific backing, but I’ve heard that stigma for the more common mental illnesses tends to be regional. The areas where people tend to look at you funny for even thinking about seeing a therapist tend to be the same places where stigma is highest. Which I suppose makes sense.

            I can’t speak for anyone else, but I live in a very pull-yourself-up-by-your-bootstraps area. Pretty sure that attitude majorly contributes to stigma.

            1. I’ve been lucky enough to live in regions where that’s not the predominant mindset for most of my adult life, but I come from a family wherein both parents have weird biases against counseling and mental health diagnosis, so I’ve seen the trickle-down effect of that on a micro-level and it’s… icky.

            2. Having mentioned hunches in another comment, i’d say I have a hunch on this front. Stigma tends to be present in some areas more than others because of the exposure to knowledge and experience. A small community is likely to have less exposure to knowledge and information than a bigger community. A village for instance probably still has ‘village idiots’ (the ‘village idiot’ being very interesting in terms of history and mental illness) in living memory, where as a city would, in living memory, already have ‘asylums’ and the suggestion of mental illness as opposed to the village ideas. That is very, very much just a hunch and an idea but certainly, anecdotal experience would suggest that stigma is regional.

    1. Oh goodness, that’s awful to have been someone’s science experiment and yet, it does seem to be how some professionals operate. On the stigma front, it was something I was hoping to cover before long. It really does seem unavoidable and my goodness, what a thing to have your friend say to you!

  3. i work for an organization that sees a lot of adolescents struggling with mental health issues largely resulting from misdiagnoses, failures in the system, etc.  it’s horrendous when clinicians and other involved “professionals” slap labels on people for the sake of making issues disappear – it makes it more likely that the youth and their families won’t get access the resources they need (at least among the population we work with – court involved youth).

     

    1. You make a very interesting point with “other involved ‘professionals'”. There are few people who can actually diagnose someone. There are lots who can suggest, have a theory or good hunch but all too often people make diagnoses where they aren’t qualified to.

    1. It is very alarming the frequency with which mental illnesses are misdiagnosed. The presence of ‘newer’ conditions may be a part of it. I fear a considerable part is that many clinicians simply don’t take the time to listen to their patients.

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