The relationship between doctor and patient – the importance to recognize the power dynamics

The relationship between doctor and patient – the importance to recognize their power dynamics and realize that the two are equal

Prelude

I’ve been speaking about my depression for so long now, and I have seen a few additional readers; as such I feel that I need to explain that yes, this is still a blog about life after child cancer. The cancer isn’t the direct cause of this depression, but it is the root cause, it’s where it all changed. For now, this is my life after the cancer. In a year, we’ll see where I’m at. Hopefully I’ll be in a place where I can share something genuinely positive with you. I’ll share some more stories about my treatment when I’m mentally fit to do so, but I’m likely going to focus on writing a book as it’s a better medium for it – I’ll do it properly this time. No five thousand words the first day, three the next and done in two weeks – but for real, planned. In Swedish.

I have also been asked to point out that we all react differently to chemotherapy – an adult, a parent or child reading this blog shouldn’t overreact when reading about the aftermath in my case. I’m a statistical anomaly together with a few others – I don’t want to be the person that made someone opt out of treatment because of my experiences. Please read this link to a post I made – I swear, on the teachings of Darwin, and Darwin himself, that it is all true. I’m not saying it’s easy, though. Also, never, ever resort homeopathic remedies; they’re a cure for nothing. They’re placebos at best and deadly at worst.

Ten babies, probably more, are dead, because their parents knowingly bought a highly toxic substance, to treat their children’s teething, the pain or itch babies get when their first teeth comes out. I realize I’m being crass but killing the babies with this toxin really would have been the only way for that remedy to work against their teething problems. They proved one thing: if you do homeopathy wrong, it does work – just not the way you’d hoped. Unless you wanted to kill ten babies to stop their teething pain. OK, I’m sorry, going off the rails here… My point is… Homeopathy sucks.

My depression

During a severe depression, everything becomes about managing getting through it, staying above water – at least for me. Anything from how and when I take medications, when I go to bed, when I wake up, how I eat, when I eat, when I shower, when I blog, when I play games. In my case, making sure I don’t read too much about things I’ve been affected by personally – meaning I stay away from anything cancer related, especially child cancer, but in all honesty, I used to have a secret a few moments ago…

I don’t really feel anything powerful in general when adults die or go through trauma, whereas a simple Netflix-suggestion can set me off completely – if it’s about a kid. I’m not sure why, but that is the case. I don’t know where the age limit goes either. I’m not saying I don’t have any empathy for adult’s suffering; it just seems like 90 % of my empathy has shifted to kids’ suffering and I only have 10 % left for adults. Also, I’m not crazy/psychopathic. My mother had me tested. She didn’t actually so maybe I am. My best friend though, Pinkie the elephant (he’s not an actual elephant, he’s just really fat, he’s actually a leprechaun made from a dead babies’ pinkie – yep, that’s where leprechauns comes from) have ensured me that I’m not in any way crazy.

So yeah, this survival phase goes on for a while – antidepressants, for those who didn’t know, don’t start to have an effect until after about three weeks or so. They are considered to have reached their peak at six weeks.  You can increase the dose in the beginning if you don’t notice a difference after a few weeks, but once you get to higher doses, the risks of getting more severe side effects become a reality and waiting a full six weeks a necessity.

It’s likely to take many months before it reaches its full potency, depending on how quickly you increase the dose. Some doctors might want to wait six weeks before increasing the dose regardless of circumstances – I’d contest that personally though and switch doctor unless it’s the one I have currently and she made a compelling argument. If you feel no effect after three weeks, it’s either the wrong antidepressant or the dose is too low – that’s how I see it anyway.

Although it can take months for it to take effect completely, you should notice a difference sooner than that, which will alleviate the depression and reduce the pressure. If anyone is going through a depression right now – two months ago, I had suicidal depression. After about a month, maybe one and a half, I was feeling OK-ish. The issues I have today, two months after, will be explained in another post, but suffice to say it’s better. Hang in there, friends.

Patient and doctor – we’re equals

I’m going to take this narrative and speak about the patient-doctor relationships – this whole discussion of how long you ought to wait before increasing the dose of the antidepressant makes it important. When you’re truly depressed, every day is a week long – the doctor better give a damn good reason to wait to wait even a week.

You both have veto rights but it’s rarely in anyone’s interest to invoke them, at least to the full extent. Of course, the veto right of the doctor is likely to have more of an impact on you if negotiations break down. If the doctor says that he will not approve a certain form of treatment, you’ll need to speak to the doctor above him – until you reach the top. Then you need to switch clinic or hospital for a second opinion.

My stand point has always been that doctors and patients are equals and all my doctors have to accept this – otherwise they’re no longer my doctor.

This is one of many reasons that you need to have a primary physician you trust, and that those in the ER or other doctors who never establish a long-term relationship with their patients are adaptable, and accept that you’re their equal. Railroading a patient – at least when I’m the patient, never ends well for either of us. He’ll get a citation and my stitches breaks – then my relatives are thrown in the ring and it’s a party.

In order for any healthcare personnel to treat you successfully, there needs to be mutual respect and the doctor must accept that they’re your equal – despite that powers they might have, you’re equal. All education in the world couldn’t educate a physician to become an expert on me, or on you. Any physician who believe that what they read in their medical books during their education is more important than speaking with me, listening to me, are simply not going to be my doctor for very long.

Fortunately, I rarely have to explain this do doctors anymore. There was the psychiatrist whom, after I explained how tough my treatment was, said that there were only two options when I got cancer – and treatment was the best option of the two. The first time, I ignored it, the second time I told him it’s debatable – which he didn’t like, at all. As the session ends, he says that everything sounds good, but when I said that the treatment wasn’t necessarily worth it, he said, “you’re up flying a bit”. I responded in a very stern voice that I am the only one who can decide whether it was worth it or not, it is not up to you or anyone else, it’s my experiences that I’m basing the value on, you have no right to impose on me. This is a typical example of someone who think he’s above me – and as I said, he’s my equal and if he won’t recognize this, I cannot keep him as a doctor.

He can have opinions about my experiences, but he should keep them to himself and certainly not tell me how I should feel. It’s this sort of doctors I stay away from, taking liberties that aren’t theirs to take. If I am to have extended contact with this unit, I will have to switch psychiatrist before we have a real disagreement.

As I said, it’s a partnership and this can only work if both parties acknowledge that their opinions have the same worth; that they’re equal. Sometimes I have an idea that works well and the doctor agrees, sometimes they have an idea that works. Sometimes, we end up just having to try. Sometimes, we rely on my own experiences – and this is extra important in my case, as I have plenty after all these years being sick, having been on many medications.

Yet sometimes, we rely on their expertise, their knowledge of how various substances works, human anatomy and all other things a medical professional should know. I guess you could summarize it like this. No one know myself better than me, and since I’ve been sick for so long, I also know what effect many medications have on me. This is my 50 % contribution. That leaves the doctor, who has invaluable knowledge about how the human body in general works, and how medications work

That leaves the doctor, who has invaluable knowledge about how the human body in general works, and how medications work in general, who can see things from another perspective. This is their 50 %. Sometimes, my experience isn’t enough – I’ll contribute 30 % to a decision and the doctor 70 %. Sometimes, the inverse can be true. Over time, it all turns out to be equal, though. I rarely do this, but I did so with my dietician – the meal replacement drinks don’t agree with my stomach, we had several options and I no experience, so I asked her: what’s the plan? This didn’t turn out well – due to my diabetes, she ordered these drinks with fibre, which my stomach didn’t like, at all. It’s not her fault though, she couldn’t possibly know – and this is where my point is proven because now, I know and I can point it out if I ever need meal replacement drinks again in the future.

This is where the importance of trust and mutual respect truly becomes apparent. Not only do you have to trust them that they know what they’re doing – you have to trust them so you can tell them things you normally wouldn’t, things that could be crucial for your treatment.

When a doctor prescribes a new medication that you’ve never tried, you trust them that they know that the medication will not interact with medications you’re already on, or that it’s bad for people with certain conditions. For instance, many medications mention diabetes, epilepsy and pancreatitis as “something the doctor should know you have” but not “do NOT take this if you have these conditions”. I tend to double check when I get medications from unknown doctors though. Once I got a medication for nausea that was contraindicated with epilepsy – not a good combination. This is the reason I always ask, when hospitalized, what pills I’m given, to make sure it’s correct.

Picture of Persona 4. Healthcare is a team effort.

Without a good doctor that you trust in, and who trusts in you, everything is pointless. I don’t know where I’d be if I didn’t switch doctors. My previous one sent me to three psychiatric units – one being for addicts…

I’m taking antianxiety medications that I’m dependant on. I took morphine, I believe for five years after the chemotherapy. I’ve had high doses of antianxiety medications before as well. This doctor sends me to a unit for drug users, after he sends me to the psychiatric emergency room and the clinic I was already signed up for my “under-control depression”. At this unit for addicts, everyone is treated equally – everyone leaves a urine sample when requested to. I won’t and I never will, I’d sooner quit cold turkey with both my epilepsy medication and the alprazolam and die in a seizure than lower myself to that level.

I’m a child cancer survivor, marginalized by the system, forgotten, abandoned, deserted, I’m not a drug user. I use medications at times that are addictive, I use them because of the pain and trauma, literally, that the treatment caused – and when I no longer need them, I quit, sometimes with the help of my local health clinic or a doctor. It has always worked before – when I’ve had a good doctor. It will work this time as well.

Make sure to have a doctor that won’t abandon you when things get rough.

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