Lived Experience Forum

[D1ng0]

I'm sure many people here have experience managing appointments, diagnoses, and goals with multiple doctors/practitioners. What have you learned about keeping track of these things and keeping your healthcare providers informed? I haven't lived with my most severe diagnoses for long, and I'm feeling very overwhelmed as I provide information to a doctor, a psychologist, a physiotherapist, two dieticians, a counsellor, and others. I'm struggling to answer practitioner questions about how I'm doing, progress I've made, and specific measurements of health. I felt like a recent appointment with a psychiatrist could've gone better, but I was so overwhelmed throughout that I couldn't answer everything I was asked.

Any expertise/wisdom you have developed in your own health journey would be appreciated. Thank you to everyone who replies. I hope you're doing okay.

[tyme]

Hey @D1ng0 ,

Great to hear from you!

From my experience, sometimes it's okay not to have answers. There were many times I wasn't able to answer the questions thrown at me.

One thing to remember though, is that they are not mindreaders. I used to assume, as professionals, they automatically 'knew' what I was thinking and feeling. Boy, was I wrong! If you want them to know something, you need to voice it.

Hope that helps a little.

[D1ng0]

Hey @tyme, thank you for your reply. It does definitely feel like questions are being thrown at me, so it's a relief to hear someone else describe the same feeling.

I'm a bit scared of not providing as much info as I can, specifically because I know healthcare workers are not mind-readers, and assumptions in healthcare have led to some extremely traumatising situations for me. So, I feel extra pressure to be super organised and prepared for appointments, because that way I can hopefully avoid some of the worst outcomes.

[Jynx]

Hey @D1ng0!! 

I know all too well the frazzled feeling of getting flustered during appts, sometimes I even go into shut down and can't find my voice! It sucks. 

My hot little tip is to make notes! I use the notes app to make dot points before appts, especially if I know there's a number of things I want to cover but worried I'll forget. It also helps me disconnect from the emotionality of it - rattling off something pre-written always feels easier than thinking and expressing in the moment. Do you reckon this could be helpful for you too? 

If you do end up forgetting something, do they let you email them, so you can flick through anything you may have missed? I wish more health providers allowed emails hey, I always forget stuff cos of my ADHD. In any case, if you do miss something, you can always make follow up appts, and maybe also let them know from the get-go that appts can put you outside of your comfort zone/window of tolerance, and that you might occasionally forget things. 

[D1ng0]

Hey @Jynx, thank you so much for your response, and for sharing that you shut down and can't find your voice, because that's exactly what happens to me. So it's very validating to hear that experience articulated by someone else.

I usually prepare lists of information for practitioners, but I don't usually prepare a shorter list for myself to tick off during my appointments. So I'll give that a go in my next appointment, thank you heaps.

Some of my practitioners will correspond by email, some don't. And some have limits around what they will discuss/disclose via email, which I totally get. Often they prefer to call me on the phone to discuss sensitive health stuff... but then we run up against my intense discomfort with phone calls 😂 So it usually feels like appointments are the most ideal time to discuss anything sensitive. I've always viewed it as a personal failure if I can't recall things... so I like what you're saying about some appointments pushing me outside of a window of tolerance, because that takes it from a personal failing to just a state of being overloaded. Cheers 👍 I'll try to reframe how I'm thinking about coordinating my own healthcare.

[Jynx]

Heck yes for reframing @D1ng0!! And you're very welcome, I'm glad that it helps to have that shared experience. It helps me feel validated too! 

Yep phone calls do my head in lol, it took me like 2 years to make a dentist appt cos I just kept putting off making the call, since the clinic didn't have website bookings 😅 I'm getting better at it though! Helps if I put things in place either side of the appt or phone call to help me prepare, and then help me settle afterwards. Even just going for a walk or buying myself a little treat can go a long way. 

All the best in your healthcare journey! Hope it gets easier 😉💜

[Bow]

Is there the option of having a support worker @D1ng0 ? Ive found having a support worker come to apppintments with me so very helpful. We often sit down before my appointments and make notes together of what i need to bring up, any concerns that she may have noticed or information that she needs to pass on from other supports too. If a formal support worker is not an option, do you have a family member or friend that could act in that position?

I have a fair few services and professionals invovled in my care too and they frequently have meetings all together, they discuss where things are at, bring any concerns to the table and make sure that everyone is on the same page- although i am not really invovled in them, i find them important. 

but as others have said... making notes and lists is helpful.

[D1ng0]

Hey @Bow, thank you for your reply. It's awesome that you have access to a support worker, I've never even thought about that before, and the benefits do sound pretty wonderful. I honestly don't know if I'd be eligible for that sort of thing, but I've never investigated it, so maybe I would be... I will look into it, thank you. (Especially because I don't have a friend or family member who can attend regular appointments with me.) I didn't know that practitioners would gather together and have meetings across different organisations and disciplines, that sounds pretty amazing. Glad you have access to that!

[D1ng0]

@Jynx Awesome, I'm glad 😃

Oof, organisations not having online booking is the worst... A healthcare clinic I attend (which claims to be accessible) only allows appointment booking via phone and email... but that requires waiting on hold for 30+ minutes, and reception never answers their emails! 😅 Really reassured (but sad) to hear that I'm not the only one very frustrated by a lack of website booking options. Speaking to reception in-person every time I want to make/change an appointment doesn't feel very accessible with my nerve pain, since it restricts travelling so much.

Wish the world catered to us more, but it is great you're getting better at calls. I like the idea of making plans to do something soothing after an appointment, thanks for sharing that. I reckon I'll take that on.

Thank you 😊 Hope you're doing well, too.

[Bow]

Oh @D1ng0 @Jynx  i love online booking platforms! So much easier.

my gp uses online bookings, but for some reason face to face is often disabled for my gp. So Annoying!

I also need to book a chest X-ray. The radiology place I use has online bookings but there is no availability all year? For X-rays, I actually think it’s cause they don’t really do appointments for X-rays cause they are so quick. But still! I want to book it in for when I want to come in and not have to wait for hours!