The different types of “I don’t know what to do with you”

I had a phonecall with my GP to catch up on the fact that I’ve been feeling worse than my normal and how I’ve responded to some changes in meds. My dad asked for a summary of the call later on and I replied “he didn’t know what to do with me basically”. Which isn’t actually true, at no point did my GP say that, although that was the gist of the call. I like my GP, he’s always very proactive in helping me and he’d (hopefully) never leave me hanging on “I don’t know what to do with you”. But it then got me thinking that even though he didn’t say those words, lots of people have, and the context in which they get said has a massive impact on how I view how the appointment went and also what I feel like as a chronic illness patient. Here are the different versions of “I don’t know what to do with you” that I’ve experienced and the way I interpret them:

“You’re not my problem. You’re wasting my time”

The most common one. Either because they don’t believe what I’m saying or because what I’m saying doesn’t fit neatly into one of their specialist boxes so they fob me off and tell me to find someone else.

“What are you expecting me to do about that? Go find someone else”

Another common one. It’s “nothing to do with them” so why would they get involved?

“Seriously. It’s not my problem. Leave now.”

The irritated one where they’re impatient they’ve wasted enough time on me, they’re not prepared to waste any more and I need to stop being an argumentative person and go away and sort it out myself.

“This problem is clearly all in your head. I’m not even willing to humour you any more”

Gaslighting. Sometimes said half laughingly. Or, even worse, under the guise of being concerned for my mental health issues, but actually being the cause themselves of half my mental health issues. They’re “just looking out for me but I need to help myself” by seeing a counsellor and doing some mindfulness.

“How many times do I have to tell you. I don’t know what to do with you. Go away”

The really pissed off one. They’ll usually follow this with standing up or holding the door open, making me leave. I haven’t had this one for a while though.

“You haven’t tried hard enough.”

Either because they think I’m lying about having tried their treatment or I’m making a fuss about nothing and I should just get on with it.

“I’m not helping you until you do what I say. I’m the doctor, you’re just a measly patient”

From doctors who don’t like being told they’re wrong. But if I’d listened and done what some doctors told me, I’d be dead. So sometimes they should swallow their ego!

“Can’t help you there, I’m afraid”

Still nope, not my problem, but more jokey.

“This is way out of my depth and you’re actually freaking me out a bit now”

One woman put her head in her hands once when she was saying it. She seemed genuinely stressed out that she didn’t know what to do to help me.

“Help. I don’t have a clue. Tell me what you want me to do/what do you think I should do”

I’m all for working with my doctor and coming up with a plan together. But it’s super stressful when they want me to come up with my own treatment plan – it’s a lot of responsibility. And if they’re out of their depth, then I definitely am too because all of my knowledge comes from experience or gut feelings, and I don’t necessarily know how or why my body does the things it does. It’s a bit of a cop out because it means if I sort it myself, they take the credit for it but if it goes wrong, they can say it’s my fault.

“I can’t help you and I’m sorry about that”

A much nicer version of the first one. Because they don’t just leave me to it. They want to help but don’t know how

“I can’t help you but I’ll try to find someone who can”

An extension of the last one.

“It’s not my speciality but have you tried…?”

Sometimes this is helpful, sometimes it’s not. Because if they go through a list of suggestions of things I’ve already tried, I feel bad for saying “yeah but I’ve tried that and it didn’t work” and it can be bordering on the verge of me seeming to be an combative patient. But sometimes they do come up with something that might help. It can also be a bit depressing to go through because it kind of rams home how difficult life is, going through a list of all the things I’ve tried in about 30 seconds.

“No idea. Let’s do a bunch tests”

Which can be helpful because they’re thinking outside the box, but it can also sound a bit desperate and like they’re clutching at straws because they don’t have a clue.

“What are we going to do with you?”

You know that jokey voice? The one where they say something silly afterwards like “you’re too young to have all these problems” or “shall we just chop your head off” kind of thing. Most of the time I don’t find these comments funny. Because, again, it highlights how depressing everything is. It depends on how well I know the person saying it though, but a lot of the time it’s nurses who’ve just come on the ward so only known me for a nanosecond.

“I’ve got too much on my plate. The NHS is overworked and under paid and I could really do with not dealing with this right now”

I hate this one. I don’t care how crappy they think their life is, they’re not the one sick and asking for help from someone who’s just trying to use *my* consultation time as a way to complain about a job they’re getting paid for. If they don’t like it, go get another job or work as something else. They have that option. I only have one place to get my medical care.

“I don’t know what to do with you but it sounds pretty crap. So talk to me about it, I’m listening”

Sometimes having someone to listen to all the issues I’ve been having and having them acknowledge it is what I need. Sometimes there isn’t a solution, but you don’t often get the opportunity to have any feelings about it unless someone takes the time to do this version of “I don’t know what to do with you”

“Ooooo that’s really interesting. I want to learn as much as possible about it”

I have a complicated medical history, but it is pretty interesting. And I don’t mind answering questions or having discussions about stuff because that’s how everyone learns.

“I don’t actually know what to do with you and I have no shame admitting that. But that doesn’t mean I’m not going to help you”

My personal favourite. I much prefer it when doctors are aware of the gaps in their knowledge but are still going to do something about it as much as they can, once they’ve done some homework.

“Leave it with me. Do X for now, and I’ll have a think and do some research and maybe contact some people and get back to you”

Another favourite. This one and the last one is usually what my GP says.

What my GP actually said, in summary, was “tell me what’s been happening; what were you hoping for?/how can I help you? shall we try X? Let me go away and read all your cardiology letters and have a think, and I’ll ring you again next Friday once you’ve seen endocrinology”. I didn’t come away with a better plan, he didn’t have any answers but he listened to me, didn’t once imply that I could be lying or over exaggerating, didn’t dismiss or minimise my symptoms, said he’d go away and have a think, do some research and wait until we’d heard what my specialist had to say. He gave me a time he’d ring me later in the day after I’d seen the specialist. And I know he will because he always does exactly what he says he’ll do. That’s exactly what you want in your doctor.

What doctors sometimes forget is that the actual prescription or treatment plan is only a tiny fraction of the appointment. That’s the “easy” part- you either come away with a plan or you don’t, and you’re not going to see results as soon as you walk out the door anyway, so physically, you’re leaving feeling the same as when you went in. What you *are* walking out the door with and what might be different is how that doctor made you feel. Did they empower you as a patient? Or did they make out like it was all in your head, belittle you, dismiss your symptoms… In 10 years time, you probably won’t remember what was said in specific appointments, but you’ll remember that feeling you had stood in the corridor thinking about the appointment you just had.

I remember the really good doctors and the really bad ones. In a field as competitive as medicine, why would you want your patients to remember you as anything other than the best? They might not know what to do to help me feel better treatment wise, but they should all know what to do with me to help feel better about the appointment itself, at the very least

Why do people care about my broken foot?

I fractured my foot a couple of weeks ago by walking up the 2 steps we have to our back door. I didn’t fall or trip or do anything except take a step. It’s not the first time I’ve fractured this foot. I’ve got osteoporosis and there are 3 other fractures in it, one of which should have corrective surgery but it’s too risky because of all my other health conditions. I have to wear the moon boot cast again and it hurts, but I filed it away as “annoying, but get on with it” in my brain. My broken foot won’t kill me and it’ll either get better or it won’t, but either way that foot is always painful because of all the other fractures already in it.

I was so casual about it, that I didn’t even bother going to a&e (the ER in the UK) to get it x rayed. I messaged my GP instead and asked them to organise an X Ray because all a&e would do would be x Ray it, tell me to wear the moon boot and refer me to fracture clinic. I wasn’t dying so it’s not an emergency, I already had the moonboot, so why waste people’s time in a&e?

The weird thing is, other people are more bothered about my broken foot than me. Maybe it’s the visual of being able to see it’s broken because I’m wearing the boot. Except I used crutches a lot before so it can’t just be the fact that people can see there’s something wrong. Or maybe it’s because people can appreciate that broken foot means pain and for most people having to deal with that for 6-8 weeks would be horrible and have a big impact on their quality of life. Which I completely understand for non medical, healthy people because they might not have any other experience to relate to. And I don’t mind them asking me how my foot is because it shows that people care. The thing that I find really confusing is the amount of attention I’ve got from doctors and other medical people because of it.

I said at the beginning that I filed it under “annoying, but get on with it” because it’s manageable. Which got me wondering why I have that mentality in the first place, when medics seem to be checking up on me all of a sudden. And I think it’s because that’s what medics have conditioned me to think. When you have a complex, life threatening condition like adrenal insufficiency, lots of doctors see anything that doesn’t kill you or doesn’t risk killing you as a really minor thing that doesn’t need attention. I went to a dermatology appointment recently where the doctor’s attitude was “psoriasis isn’t that bad really, it’s an inconvenience and can give you body confidence issues but it’s mostly just something that you have to learn to manage”. Which I agree with because I’ve been told things like that a lot and in comparison to my adrenal Insufficiency, psoriasis is nothing. But does he say that to every patient who walks through his door? Because if most health conditions are just annoying and don’t kill you, why does he treat any patients if whether it kills you or not is the criteria of what counts as bad? Why does anyone bother to go to the doctor at all, since so many people’s health conditions don’t tend to kill them? Doctors say that kind of thing all the time to me, which means it’s now engrained in me that if it probably won’t kill me, it doesn’t matter and I need to get on with it. Which is not the way I should be going through life!

I had an endocrinology appointment in February where I said I felt sick and dizzy a lot, I’m having hypos and I’m struggling to sleep but feel tired all the time, along with many other symptoms. I didn’t expect them to do anything about most of my symptoms because they never do, but I thought they might offer some advice about the hypos. Hypos can kill you after all. Except the registrar (resident in USA) told me instead that “non diabetic people can have hypos and they’re not dangerous, you’re probably just getting worried about them, you don’t need to do anything”. She dismissed me with a “well keep doing what you’re doing” after she’d made it very clear that she thought I was somehow talking myself into having hypos with my anxiety. Which annoyed me and I went back to my GP and said I wasn’t impressed.

And then I broke my foot. Once it was confirmed I’d broken it with the x Ray, a GP rang me and said I needed to adjust my steroids but I should ring my endo team at the hospital and double check that what I was doing was ok. This then triggered a phonecall from the same reg that I’d had in February who was saying that the exact same symptoms I was describing in February and had repeated to her now along with the words “I’ve fractured my foot” were now a big problem and I needed to see the endo team again.

I’m not sure if it’s a fault with the system or it’s down to individual people, but I’ve felt more cared for as a patient in the 2 weeks since I broke my foot than I have done for a long time. There’s empathy about my pain, how I’m coping getting around, checking up on me… I think my GP/practice staff do care about me anyway, but the fractured foot means they have a reason to ring me up and talk to me, whereas they didn’t before. But my endo team’s attitude baffles me, as does the response from other HCPs I’ve been to for other problems, and their increased empathy about what’s going on.

All this means is that, perversely, I’m quite enjoying having a broken foot! I’m finally feeling listened to about how horrible I’ve been feeling because my pain level, low cortisol symptoms and impact on quality of life are now justified in other people’s eyes. I’ve got an urgent endocrinology appointment in 2 weeks time but when I asked if I could have one in February, I was told there was a 6 month wait. People offer me help in normal every day situations, whereas they didn’t before even if I had my crutches with me. Random side note: It’s weird what people see as “worthy” disability wise- I get a lot more support since I put a “medical alert” label on my assistance dog in training than when he was just wearing his assistance dog in training vest. I’m not saying I want everyone to chase after me and do things for me and check up on me all the time, but I finally feel like HCPs are finally doing what I’ve wanted them and needed them to do for a long time. I feel like fewer people are blaming my symptoms on something psychosomatic or psychological. Question is, why did it take a broken bone, something which will (hopefully) be healed in 8 weeks to prompt care and compassion for symptoms I’ve had consistently for (at least) the last 9 months?

I’m not sure what the point of this post is. Whether it’s me saying I shouldn’t be as blasé about broken bones as I am or whether HCPs should pay better attention to my other more debilitating symptoms without needing a physical/visible injury. Or both! Either way, my broken foot has turned out to be a blessing in disguise since other aspects of my care are now headed in the right direction.