Struggling to advocate for myself at the doctors any advice

[sleepyjessie]

Hi everyone

I’ve never been great at speaking up for myself with medical professionals and it’s something I really want to work on. I feel like I just fall apart in appointments and I don’t know why. I get flustered and can’t explain everything properly and afterwards I’m left thinking did I make sense did I forget to say something important

Lately I’ve been feeling exhausted pretty much all the time. Even with a decent amount of sleep I wake up tired and by the evening I’m completely drained. I’m always cold, my body temperature feels really low, and sometimes I get lightheaded or dizzy when I stand up. I’ve also noticed some brain fog and headaches that make it hard to concentrate.

I suspect it could be related to a deficiency or possibly my thyroid, but I find it hard to get these things taken seriously because I struggle to advocate for myself. For example with chronic sinus problems I let things slide for years because I couldn’t push back and ended up needing surgery. I don’t want to let anything else go unnoticed

I’d really love advice from anyone who struggles or has struggled with this
• How do you advocate for yourself in appointments
• How do you make sure doctors take you seriously when you’re anxious
• Are there tricks or strategies to help keep everything organised and get the most out of appointments

Thanks in advance any tips would be really appreciated

It's fine to write it down and hand the doctor it, read something you've written, make a list so you don't forget anything, or ask for a friend/relative/partner to go in with you.

hi, I would make a few bullet points on my phone to prompt me so I can explain what the issue is, ask what I need, and ask about diagnostics or treatments.

i have had quite a few health issues in the past, my current being my cancer diagnosis. Not at all saying that’s what you have but my doctor was quite dismissive of me almost didn’t refer me, but said as I asked and seemed anxious she would err on the side of caution.

im no doctor myself but its sounds like what I had when pregnant, you could be anaemic.

easier said than done, but use the above as an example of how advocating for yourself is so important. If I was fibbed off, my route would be completely different…

You can write the list down and I suspect you’ll be offered bloods with those symptoms

I just completely fall apart. To the point I was sat there with a 40° fever and nodded along when the ACP told me the reason I was unwell was my weight and I should have tried harder to lose some. Obviously when I came out and threw up all over myself in the car my mum took me to A&E, but for some reason I really fall apart. I have a telephone consult coming up and I just don’t know how to keep my composure. Is it okay to read from a list on my phone?

complete the online form with your symptoms and ask for full bloods to be done so that when you make your appointment your doctor has something to look at.
if not, you’ll just get referred for bloods and have to go back.

I have the consult already, is it possible for me to ring up tomorrow and ask for bloods to discuss with the GP? I think I’m so scarred from my past experience that I’m really bracing myself to be told it’s my weight, despite having lost nearly 10 stone from my absolute heaviest

I work with drs so am pretty used to arguing advocating but I used to be the same as you. I agree with the poster above, writing things down can be helpful. Wrote down what your symptoms are, your concerns, what you would like to happen. So say that you are concerned about your thyroid function so would like blood tests to rule out any issues. If you go in prepared you will feel more confident. If they dismiss your concerns, ask them why. Don't be afraid to ask for another Dr if you find a particular one less sympathetic. Take someone in who can advocate for you.

With the best will in the world, you have to frame the problem that you want to solve. You did so above so ask about it. It is a legitimate question, and you deserve a decent answer.

If making notes or doing bullet points isn’t working, I’d get someone to come in with you.

I’m just a bit worried that if I read off a script they’re going to think I’m seeking something

“Is it ok to read notes from my phone?” Of course it is, why wouldn’t it be? Who would tell you no. The doctor isn’t going to say sorry you can’t read that.

if anything, you can say, just to be super clear and concise id like to read to you my symptoms which I’ve wrote down, followed by questions I have, followed by the discussion of any treatment or plan of action to follow.

that way it’s clear you are informed, direct, and know what you want. I personally find writing it down helps jog my memory so I don’t miss things, and it sounds it may help you.

if someone mentions your weight, then put at the bottom of your symtomps (wrote on list), - remind doctors it’s not due to weight but due to x y z - and remind them before they say anything, pre-empting it.

i hope some of that helps: you can do it !

You are seeking something. Help.

I think it's harder to convey things over the phone, so if I'm worried about not getting things across I would ask for an in-person appointment where possible. They physically can't see you on the phone which means they can't do blood pressure, heart rate, look for paleness in the eyelids etc. So when I think those sorts of things might help, I try for an in-person slot. A good doctor once called out my name and watched me walk down the corridor towards him because the tannoy thing was broken.. He pretty much knew I had a chest infection by the time I got in the room. He said he was thinking of getting rid of the tannoy as seeing patients move and breathe told him so much.
For now, split you list into three sections. Symptoms first, then what you are worried it might be, then tests you want doing if possible (or if not, can they tell you why please).

You’re seeking help with the next steps to understanding your issue
you are seeking something?

I’m just concerned that they’ll think I’m after some sort of drugs. I don’t know what, because I’ve never been like that in my life. But I’m really in my head about it, i think because I’m feeling so poorly

Not at all. I like it when someone comes to an appointment prepared, and it shows me what they concerns are.

But you are after treatment, that's why we go and see the doctor because we want them to make us better. Unless you are after strong painkillers or benzos regularly they will not think you are just seeking drugs. Thyroxine is not habit forming.

I think what I’m going to do is feed all my symptoms etc into ChatGPT and have it come up with a script for me

In the meantime, are you taking an vitamin tablets at all? If you've lost a lot of weight recently I'm also wondering if it could be anaemia or Vitamin D deficiency. If you are taking a multivitamin or anything, let them know that so they can see what you've already tried. Also, if you've done a particular diet or used weight loss injections they may need that information as well. They need as much info as possible to help them find the right diagnosis, and you are the best person to help them. Try to think of yourself like that, if you can. Good luck xx

Personally I'd keep it on your words as you will feel more comfortable. Just keep it simple. These are the symptoms I have. I am wondering whether it may be thyroid related, would it be possible to check my thyroid function. Would you recommend any other bloods or tests?

I’ve tried them all. They don’t help so aside from the hair supplement I’m taking (which has slowed down my hair loss) I’ve stopped them all because they’re too expensive to justify

I’m just really in a scramble at the moment. It’s taken a long long time for me to seek help and I’m also worried that they’ll count that against me

Not at all. They will be more focused on trying to help you.

You don't have to earn health care. They are there to help you.

I think I’m just really biased from my past experiences

Keep it in your own words, or you risk losing nuance. Your paragraph starting "Lately" is a great opener. Rehearse that a few times.