Whilst wearing my medical student hat, I have attended a fair few clinics. Some of them have involved little more than ear wax removal (which, in all honesty, was one of the more disgusting mornings of my life), some have had two year olds throwing full temper tantrums on the floor because they can’t take Bubbles the walking stick home with them (I’m investing in candy canes I can give them instead), and some have been downright harrowing, both in their medical content, and in their emotional impact.
Now, I know exactly how these clinics work. Patient comes in, speaks to (hopefully) friendly consultant, consultant makes diagnosis (if it’s the first time), treats something, or makes a plan. Follow-up is or isn’t arranged, patient leaves, next patient comes in. This process repeats all morning, or afternoon, consultant moves on.
Yet, I’m utterly terrified at every appointment I have to attend for myself. Often, these fears are totally unfounded, but it only takes one less-than-friendly doctor to ruin it for future appointments.I have got to the stage where I insist on taking someone with me, partly to ensure I remember everything said, and partly to push me into the room if needed. I’ve had two such appointments in the last month or so, both of which have gone very differently…
The first was seeing an Orthopedic surgeon, to discuss what could be done for my knee. Surgery had been suggested as an option should physio not work out, which it hadn’t. So off I hobbled, with BoyFace in tow and a pile of articles about the difficulties of operating on people with Ehlers-Danlos Syndrome (we heal badly, we’re crap with anaesthetics, and surgery often doesn’t work as hoped). I was hoping for a discussion of my possible options. I was sent for Xrays (in all sorts of exciting angles), then waited for about an hour and a half. Fine, clinics run late, I’d like longer in an appointment if I needed it. Eventually, we’re summoned in, by a surgeon who briefly introduces herself, takes a swift history that missed (in my opinion), a few key points like painkillers, mobility, pretty much all of the last three months, then examines me. “Does your kneecap feel unstable? It looks unstable.”. It was certainly brief, but hell, she’s the expert. MRI was organised; “I’ll see you a couple of weeks after that, so in about 8 weeks.”, and as she was writing up, I mentioned that I had a wheelchair referral organised.
“Well, those muscles in your thighs are all that’s keeping your kneecap in place. Getting a wheelchair will weaken them, and further injure your knee.”
Now, this all makes sense. I would want all patients to have that pointed out to them.
But I left that consultation and cried on the bus home. Because she didn’t ask and thus didn’t understand. She didn’t understand that I can’t do ward rounds. That I spend most of my life popping painkillers that are wearing a hole in my oesophagus whilst leaning on walls, praying for a seat behind the nurse’s station. That I’ve missed days out with people I love because a bad day had meant an ‘unintentional rest day’ stuck in bed, while others party on without me. That I have tried to get to crash calls only to have people cracking up along the way as my stick flies alongside me, and get there far too late to see or get involved. She didn’t know that I didn’t want to be using a chair, that I cried when I asked the GP for a referral. She didn’t know that I’ve missed days of work, and been sent home by consultants, worried about how much pain I was in. She didn’t even come close to asking, and she certainly didn’t seem to care. She simply snapped at me, and left me feeling like a fraud, with my papers on EDS and surgery still folded up in the bottom of my bag. I’m seeing her again in September. 14 week later was her next appointment. 8 weeks was nothing but a guideline.
Then, I was re-referred to the Rheumatologist who originally diagnosed me. She’d originally diagnosed me and discharged me to the GP, who she hoped could manage my care. I didn’t want a re-referral. I didn’t even know I was getting one, as it was never discussed with me. My GP was alarmed at my deterioration over the last 6 months, and so sent me back, which would have been fine, had she mentioned it. All I knew was that I was being sent back, and it felt like a trip to the Headmaster’s Office. I felt certain she would accuse me of making it out to be worse than it was, or take away my diagnosis altogether. When you’ve waited this many years for someone to explain what’s wrong with you, the idea of that being taken away is terrifying. That diagnosis was my lifeline, and to an extent, part of my identity.
Fortunately, I could not have been more wrong. I again took my other half, who was welcomed in (the last consultant didn’t even acknowledge he was in the room), sat us down, and went over my previous letter with me, letting me correct anything. She took another history, re-examined me and let me discuss my worries. BoyFace was able to join in too, and I felt supported, believed and that there was a plan. I left with a new painkiller that I wasn’t scared to take, the promise of a referral to a specialist physio or a specialist centre (University College Hospital), and a follow-up scheduled for 6 months time. The appointment was frank, I was listened to, and there was even laughter. As consults go, for me, it was pretty perfect. This time, I wanted to cry with relief, because someone believed me. There was no skeptical looks at me asking for better painkillers, there was a prescription. There was an acknowledgement that yes, my life has massively changed, and that if a wheelchair would make work and life easier, then that was what was needed.
Two very different consultations with two very different consultants, and no doubt many more to come. So what have I learnt to help people with future consultations?
1) Take someone with you. No medic worth their salt will think any less of you for doing so, in fact they may welcome another presence in the room. Another person can remember the bits that you in your more stressed out moments would forget, and if like me you have a tendency to play it down in that setting, give you a gentle push. Just ensure it’s someone who knows you well, and who you feel comfortable discussing intimate details in front of – you can’t always predict what may come up!
2) Write down any questions you have, or things you want to discuss. I’ve seen patients do this, and have wished I’d done it after appointments when I remember what I’d forgotten! You may not need the list at all, but it’s good to have a back up just in case.
3) Don’t be afraid to talk. If it’s important to you, then say so. It may influence the plan, or even your diagnosis. However insignificant it may seem, if that niggling voice is in the back of your head, SAY IT.
4) Be honest. I am particularly guilty of this one. It’s easy to play it down because ‘The Doctor sees worse off people every day’. Yes, they probably do, but that in no way diminishes your problems, and you will feel FAR more stupid having to correct yourself subsequently if it gets worse.
5) Be ready to listen. You’re seeing a top dog. They are an expert in their field, in which you are a sheep (other farm animals are available). Expert patient you may be, of course, but there’s no point seeing them if you don’t take their advice at all. You can talk to a mirror at far less cost to the NHS.
6) Ask for support. If you are struggling, ask if there is anything they could suggest, whether it be a self-help group or a leaflet. There’s no shame in it, and they’d rather you were helped between appointments!
7) If you don’t understand, ASK. Trust me, patients who go home and induce a Google-shaped panic take FAR longer to sort out after the event than those who just ask if they don’t get it. You’re not expected to know everything, and it’s far easier just to clarify there and then. I did this over painkillers at my last appointment, and I’m actually supposed to know that sort of thing!
8) Remember, they’re human too. When I arrived at Medical School, I had major Imposter’s Syndrome, because in my mind, all medics were superhuman, and I knew for a fact I wasn’t. This is most certainly not the case. They all have flaws, just like us, and they make mistakes, just like us, and they like people who are nice to them. So be human. Crack a joke if you fancy. Don’t be afraid to ‘get on’ with your doctor. If you’re going to be stuck together for years, liking each other can only help!
9) Don’t bitch. It’s fine to say you’ve run into difficulties with other professionals. It is NOT fine to say they were awful/useless/incapable, because the chances are that they weren’t. You just didn’t get on, or it just didn’t work for you. Bitching about their colleagues (because that’s what they are), is always going to set a doctor on edge. Partly because who knows what you’ll go on to say about them?! Be tactful, be polite.
10) Be open-minded. By all means have suggestions, but don’t shut down every alternative offered. You may be surprised at the outcomes.
Appointments are a huge deal to patients, and good clinicians will try to keep this in mind. I know I spend far too many hours worrying about each one. Take some deep breaths, go in, smile, and try to enjoy it. Because I promise you, that is not only possible, but it helps.