I’ve got a few appointments coming up with some ‘big’ doctors. They might not actually come up with anything at these appointments (lots of tests planned) but they’re ‘big’ ones in the sense that I won’t know more than they do about endocrine-y things- they’re the big bosses. That makes me sound like I don’t have much faith in my other doctors, who are also helpful, but I do spend a lot of time in some appointments explaining what my current diagnosis is and how it interacts with other bits of the body because they don’t understand it. Not really the way it’s supposed to work!
I get anxious about consultant appointments but not for the reasons you might think.
Getting ‘bad’ news
I’m not worried about bad news, in fact the best appointments I’ve had have been the ones where I’ve been given bad news. There’s actually something tangible to work with then! The one that stands out most in mind is where I got told I needed to make permanent life changes as my current life was killing me. It was a relief to hear this because it meant I had something I could work with and take control of rather than trying to keep it all going. If you feel sick already, you’re being told something you already know, it’s not a surprise.
So you might be thinking if I’m not anxious about the thing that most people get anxious about, what do I have to worry about? Basically, I have a similar level of anxiety to how people feel about having a big meeting with clients or when they’ve got a business trip planned: sense of anticipation, the desperate need for everything leading up to it to go well, stakes are high kind of feeling. Just like flying internationally, going to the hospital (for me) feels a logistical nightmare.
Getting up early
Most of my appointments are morning clinic ones, and even if they start at 11am, I still have to be up and functioning a lot earlier than normal. Which I struggle with. I also have to take tablets and eat at an earlier time, which messes with me for the next couple of days.
Travelling to the appointment
I can’t get myself to the appointment which means I have to rely on someone else taking me. It’s not a big worry, it’s just another thing to factor in.
Getting to the appointment
Two things which tend to happen when I have to get up early is I need to wee every 10 minutes and I also get a terrible stomach ache. So the journey is usually uncomfortable for me.
Lots of people hate parking in hospitals because it’s one of the most irritating things in the world. There are never enough spaces and you have to leave an extra half an hour because it can take that long to find a space. But I also have to factor in I can’t walk far, and hospitals are about the only place your disabled badge is useless (because there are a lot of disabled people).
Walking to the appointment
I have to leave extra time to get from the car to the appointment because I’ll:
A) need the toilet so have to go there first
B) need a few rests to get to the right department
C) want to leave time to cool down because I’ll be sweating a lot by now and don’t want to see my doctor looking that disgusting
D) I’ll drink a lot of water to cool down so I’ll need to go to the toilet again. The more I walk to the toilet, the more hot I get, so I drink more water…
Sometimes I use a wheelchair but they’re like gold dust.
Outpatient departments are noisy and tend to be open places with lots of clinics. I find that level of noise hard to deal with so talking to the receptionist can sometimes be tricky if they don’t talk clearly enough. I also will struggle to stand in any type of queue after walking that distance.
Plus I have lots of appointments. So part of me is always worried while booking in that I’ve got the date or time mixed up, or I’m in the wrong hospital.
You always have to have your BP, heartrate, weight and height done before clinic. My BP and HR are always high in clinic partly because I feel like I’ve run a marathon, partly due to white coat syndrome. My weight is a sore spot: the person doing the obs doesn’t know me and doesn’t know my case but there’s a ‘make every contact count’ policy, so I nearly always get told I’m overweight with a pitying/disapproving glance. Which leaves me wanting to scream at them because my weight is part of my complex medical problem which people are still trying to work out. Instead I listen to their lectures, smile and walk out quietly seething.
Seeing the doctor
So I’m already ridiculously wound up from everything before I even get to the doctor’s room. I worry that the doctor won’t be able to help me because they’re waiting for further input from other teams, need blood work or because it’s a waiting game thing- the thing with endocrine disorders is that you have to keep testing because things change all the time, even on treatment. I’m always anxious they ‘won’t believe’ me, even though I tell the truth and am a good patient. I don’t always trust them if they get fundamentals of my condition wrong. I worry about getting fobbed off. I feel bloody knackered because I basically need a science degree to understand half the words they’re saying- endocrinology is not easy. I get the most anxious that I’m just going to be told to get on with it (which happened a lot in the beginning), and left to deal with it by myself. Or that the next review will be in 6 months
I always go with the hope that something will change or there’ll be some new diagnosis which will mean a step forward, knowing fine well there probably won’t be. But it’s good to try and be a bit positive! It’s a bizarre feeling to leave the appointment disappointed that there’s ‘nothing wrong’ with you (that they can find currently), because what it really means is that there *is* something wrong but they haven’t found it yet. Which means you have to go back to feeling awful and despondent and wait for the next round of tests and appointments to start the cycle again. Realistically, I’m not going to miraculously feel better until someone works out everything that’s making me ill in the first place. And it’s a giant puzzle where different pieces keep going missing.
There are lots of challenges and anxieties for me due to the logistics of going to an appointment. But the hardest bit is walking out the door knowing that there’s very little chance of things improving for another X months at least. The clock starts again and all you can do is concentrate on one day at a time. I go to a lot of medical appointments so the idea of seeing a doctor and hearing news doesn’t make me anxious by itself. It’s what they’re not able to tell me because I’m a bit of an anomaly and how they can’t help me which I worry about the most.