If you have a long term condition, you get taught how to manage symptoms and most of the ways it manifests by medical people, but you learn most from experiencing different scenarios and working out what works for you. In the same way that not all size 10 clothes fit every size 10 woman, everyone is different, so logically it makes sense that treatment plans can’t be 100% exact for every scenario for every person; the plan is developed from what works for most of the people based on research and doctors’ experience.
But this quite often leaves patients with this feeling of responsibility and pressure. Because things don’t go to plan in life or you get it wrong (hey, you’re a human), you think that it’s your fault and take responsibility for it when it’s not your fault. There are obvious times when it is your fault e.g. Not taking medication for long periods, doing things which you know exacerbate your condition, but if you’re a ‘good patient’, it quite clearly isn’t ‘your fault’ if things go wrong and you’ve tried your best.
If you spend a lot of time with medics or in hospital, you start to get a bit of a weird thought process and try to think ‘what would my doctor do’, partially because you’re trying to avoid medical intervention at all costs, but partially because it helps with the ‘not trying hard enough’ feeling. But patients aren’t doctors, so we shouldn’t be trying to second guess things and treat ourselves without seeking proper help if we need to. That’s where people with chronic illnesses tend to run into problems- seek help too often and you’re regularly told you’re not ‘managing your illness well enough’, but if you don’t seek help you’re being irresponsible and ‘not managing your illness appropriately’.
Doctors, I’ve discovered from experience, spend a lot of time telling the patient it’s their fault or they should manage things better. It’s taken a while, but I think it comes down to two reasons:
1) lots of patients lie to them so they assume all of us are liars.
2) doctors don’t like not being able to fix things.
The first point shouldn’t happen but it does. Lots of patients do lie and that makes doctors wary. I can appreciate that but it still shouldn’t affect my care just because the guy before lied through his teeth.
The second point is more complicated. The reason people become doctors is because they want to help people. It’s in their nature to care. They want to make a difference. So it must be bloody frustrating for them for a patient to keep coming back saying ‘nope I still feel crap’ and them not knowing how to fix them. People expect their doctor to be able to fix them and wave a magic wand. So not only are the patients worried that the doctor is blaming them but the doctor is also freaking out about the patient blaming the doctor. But because no one sits and communicates that to the other, you can sometimes hit an impasse. (Although it is worth pointing out that some doctors are just uncaring individuals who want you out of there as quickly as possible because they really can’t get over point number 1 above. But that’s not every doctor).
The doctor might be out of their depth or not have any expertise in your condition. In my case, my illness does what it wants and doesn’t follow any of the ‘normal’ treatment plans that everyone else can manage on, it’s like a rebellious teenager and does the opposite. Which doctors are struggling to work out. Some of my doctors put all the blame on me and kicked me out, some told me it was all in my head, a few thought I was lying about it and a small proportion of very good doctors admitted when they didn’t know but said they would try to help me anyway.
Those doctors are the best because it lifts a weight off your shoulders. Someone is acknowledging that it’s your stupid body that’s causing problems, not you as a person. That it’s a challenge but they’re not going to ditch you and leave you to manage by yourself, telling you that ‘everyone else managed on this plan do why can’t you?’. That they’d rather clear their schedule and spend an hour with you trying to work it out and prevent unnecessary emergency admissions than throw some tablets at you and say ‘work it out and get on with it’.
Doctors don’t like the fact they can’t fix everyone, but uou only make break throughs in medicine because people and illnesses don’t conform to the norm and research or discussions take place. So while it’s annoying being an anomaly/medical mystery/complex case, it actually could benefit future patients (if the doctor is one of the good ones). It sucks to be chronically ill, but at least if you have to be constantly sick, you may as well be a limited edition version so that your illness might help someone else in 20 years time.
That’s what I keep telling myself anyway 😉