How to Deal with Doctors while Living Chronically Ill

[@thechronicallyillcowgirl]

Just thought I'd also remind us all (myself included) it's important whether we had a good or bad experience, to fill out and return the survey's the offices send us! Giving feedback helps them be better and holds people accountable ❤️

[@shay7821]

This helps so much. I’ve had a plethora of new symptoms come up recently and feel like I’m going insane. Thank you for helping me believe what I’m feeling is real so I can hang on until we figure it out. ♥️

[@amber3574]

YES 🙌 GIRL. thank you so much. This is exactly what I needed to hear today. Thank you for taking your time for us 🥰🥰🥰

[@ellagrace1601]

Just a word of advice - walking in to a specialist with a symptom journal or list before you get a diagnosis immediately will make you look like a hypochondriac (not that I agree or anything, purely from experience and what I’ve heard). From their point of view, having a journal or written list of symptoms or anything looks to then like you are hyper focused on your health and that inherently leads them to the conclusion that you are convincing yourself that you are sick. Make a list that you can bring and look at where the doctor can’t see it, look at it before the nurse or doctors even enter the room and avoid letting them see you with a written list. After your diagnosis though, it is really helpful to track your symptoms and show your doctor proof that you are tracking this. As tracking symptoms shows them that you are putting effort into getting better, which keeps them from thinking you want to be sick or are convincing yourself of such sickness. Backwards I know, but this has been helpful in my experience with chronic illness.

[@FLMegan]

I'm TERRIBLE at this bc the specialist are awful. I have to lower my expectations or expect them to get it wrong...bc they do. Repeatedly. I have made lists and notes just to have them tossed back at me. I have a fab general where im spoiled with a listening human so I was hoping my Rheumatology and endocrinologist would be too. I have neither now lol and they know why. I think this is really good advice for all of us. Thank you. ( huge trust issues here too and i often make a appt with my general to review what the specialist said bc I do trust him)

[@bread781]

Hi, I've actually looking into POTS but my doctor isnt listening so thank you SO SO SO much

[@YTStoleMyUsername]

I just got diagnosed today and my rheumatologist rushes me and makes it very difficult to even get out a complete sentence. She constantly goes "ok, ok, ok, ok, uh huh, ok, ok, uh huh, ok" while I'm speaking. It's very jarring & I hate when people do that. Strangely, I can hear her clearly in the room when she is with the patient before or after me (her regulars) and she doesn't really do it to them. So is it futile to try and give a decent explanation of your history/symptoms to a doctor like this? She said it was likely fibromyalgia due to all tests being negative, but that I should see a psychologist/psychiatrist. That it was probably due to stress/anxiety/depression. 😡 While I do believe mental/emotional issues are definitely a component, it doesn't start and end there. I literally feel like I'm in the 1800s being told I just have hysteria.

[@amandafawley9519]

I have a question, I have pots type symptoms post covid. The cardiologist caught fluctuations on the heart monitor but he was dismissive. He said pots was overly diagnosed. I see a neurologist but I’m a bit afraid because I do have good days and my heart isn’t crazy high everytime I stand every single day, so it’s hard to be taken seriously. Would a journal of heart rate/blood pressure help for a diagnosis?? I even took videos of a pulse ox when I stand to prove. I feel very dismissed everytime I see a doctor.

[@Aimee_Esther]

Yeah I totally think that loggin your hr/bp could be helpful for your doctor! Whenever I feel like a doctor isn't listening to me or treats me like it's all in my head or not a big deal, that's usually a time I look for another doctor. It's hard breaking up with a doctor and finding a new one but sometimes it's the best thing to get the care you need. Keep me updated! :)

[@amandafawley9519]

Thank you so much!

[@beccab2151]

Can you talk about how to make a symptom journal?

[@Aimee_Esther]

I made one for you, linked in description.