Struggle to go to a Doctor when you are Autistic and Tip to Cope! 

Hi there! I found your channel via a post by Orion Kelly and I scrolled through your vids and this one stood out immediately to me so it's the first one I've watched so far. I'm from Australia so there are certain financial pressures I don't face when dealing with doctors, specialists or hospitals for which I am eternally grateful, health is almost too much to manage without financial considerations on top of it! I've had a lot of trauma with doctors not listening or dismissing my issues so it's very hard to motivate myself to go when I need to. I do tend to refer to something over here we have called Nurse-on-call which is a phone help line with qualified nurses who will listen to your symptoms and help you decide if you need to go to the doctor, see a pharmacist or depending on the severity they can offer to call you an ambulance if you need one. It helps to have someone willing to listen who is qualified to give me that push when I need it. The medical journal is a great idea! Now how to figure out how to remember to use it haha.

medical journal -> good idea labels -> good idea

The worst experience, I, had at the ER, was when my youngest son was hospitalized during Covid. He didn't have Covid, it was a psychiatric issue. I had to wear a hospital gown, gloves, a mask, and a visor over top of the mask. Then the "kicker" was, he could only have one visitor, the same person, throughout his entire stay. Fortunately, he was moved to a smaller hospital, where both Mom and Dad could visit together. We got through it all, but the. ER during Covid times was just nuts😮😮😮

labels: black marker on white label is best; as large and bold as is practical for the item-- should be "at a glance" keep a sharpie (black marker) in your fridge, use it to write on containers, etc. for 'permanent' labels that you dont want to smudge, use scotch tape to 'laminate' label (I could make a video of all these and more, lol.)

I'm sorry you've been unwell, take care ! I hate going to emergency, and the 6-8 hours in the waiting room. I avoid doctors as much as I can, I've seen too many of them already. I usually go when I can't stand pain anymore (and I'm used to intense chronic pain, I can endure it quite a long time...). And they never believe the level of pain I describe, because my face don't show it, or I'm not crying, I don't know... I don't know how we are supposed to show pain to be taken seriously, so in the end, I don't trust them very much. I wish ther was a way to switch bodies with the doctors, just for a few minutes, to let them understand, it would be so convenient ! Take great care of yourself, get well !💕

A medical journal is a good idea. Our hospital closed and my doctor had to move to a new facility. All of my records are gone and neither he nor I have been able to get my records. Good news though, the new facility is using the Epic software which is tied in nationwide. Any care giver using the Epic software can instantly get your records.

One a.m. on 6/20, out of the blue, I had abdominal pain and passed bright red blood. A 45 min. drive to the e.r., quick ultrasound, and surgeon tells me I have a ruptured colon and will need to immediately have a colon resection with a "temporary" (6 months at least) colostomy (stoma with bag). I was hospitalized for 9 days at the height of the first Covid period and could have not a single visitor the entire time--during which I was in a state of shock at what had just happened to me! I ended up with the bag for 1 year, & then scheduled for colostomy reversal surgery which itself was a frightening ordeal (with no guarantee of success), in a large city hospital not close to home. The surgery was successful but lengthy recovery and a few scares along the way. I had further surgery for a related hernia last June and was then diagnosed with PTSD ( in addition to my G.A.D. diag.) I'm extremely fearful of ever facing any surgery again, and super-anxious about all dr. appointments. I postpone whenever possible. I'm very glad things turned out okay for you, Jenny. I do very strongly relate to your fears.

Im so sorry about your pain. However, thank you for talkign about this. I often feel so guilty as I go to a regular dr like once a year at best (sadly). Ii need to improve- I just super hate drs and dealing with people and etc. which sounds lame. Its physically tiring to go. People always tell me **Oh really, you seem fairly social when you go out and mostly outgoing etc. ** But I suppose I learned from some family the things you are suppose to do and copy that very well. And sometimes, I dont even mind certain outings with people I like in like one on one or small groups of people I am very familiar with. However, no one enjoys the drs I think- plus I am very unfamiliar with like what is going t to take place, what they need to know, always feel ashamed when they are like how long has it been since you have done....**whatever test or health related thing** . I just wanna be like listen- if you had a more comfortable way for me to go and mingle less with humans and less awkward waiting and talking to people and lights that didnt feel awful, and sometimes smells that literally make me feel nauseous- I might come more. (Although, honestly- I'm not sure as I literally dont love leaving home.) I just suck at how to even tell them whats going on with me.

The issues you bring up in this video are so relatable to me. The idea of a medical journal is brilliant. I’m going to do that, moving forward.

Thank you for this video 😊

Sorry to hear the stress you've been under but this is such an important video. Thank you so much. Next week I have to go to the pain specialist - I've had the luxury of postponing the appointment for months but I am now really in bad shape, the pain is so much that I cannot sleep at night without meds, I can't even take care of my cats properly. But the appointment ... what am I going to say? How do I explain a pain? how am I supposed to explain a pain that is different for everyone (is it not??), how do I make sure they take me seriously, but also not to think I'm being a hypochrodriac ... It is the most challenging social interaction ever.

I'm having a drs appointment soon and taking a support worker with me. I'm scared I may scare my worker away if I have a melt down or shut down, or worse, if anyone might call the mental health unit to come get me since I was raped when I was age 5 by the drs & nurses while at childrens mental health hospital. Now I have a late diagnosis of Autism which the hospital mental health unit didn't understand when I was there at age 5. I'm age 63 in year 2023. I've been in burnout mode for about 20 years & this appointment is taking more energy than I have & I feel like I may not survive! I have fears and no trust. The burnout is at toxic overload! It's causing me harm! I'm writing this comment to help others understand why some people react strongly when entering medical places. Especially people like me with autism and trauma.

Great video!😁

Really sorry to hear you've not been too well Jenny. Love the new format of your video by the way. Hopefully you'll feel less stressed not always feeling like you have to spend so long editing👍😊😊

I've been in pain for 3 months in my leg. I went to the ER for the 4th time last night because I've been concerned that it was a blood clot. They reluctantly did an ultrasound because my Mom insisted. Guess what they found....A blood clot. Years ago I went to the ER with extreme arm pain 8 times and they thought I just wanted drugs. One doctor finally did a CT Scan and about 45 minutes later a team of people came in with a neck brace and rushed my off to surgery. I slipped a disk so bad it was endangering my Spinal Cord so they had to take a bone from my hip to do a fusion. Then another time when I had my Cataracts done I lost vision due to a Vitreous Liquid Hemorage. It took 5 times before one very kind doctor said the obvious....The lens was misplaced and rubbing on my eye causing this. When I'm trying to explain all my symptoms they like to cut me off and say, "What's the main issue you are concerned about?" My symptoms could all be related and usually they have been because medical issues cause symptoms that can tell them a lot. I have seen so many medical people with bossy control issues and compassion fatigue. I'm very sensitive about the way people speak to me. When I mention that I'm Autistic they could care less...at least from my experience and the professionals I've been treated by.

Good video on an important subject. I dislike going to the doctor as well. I was getting somewhat panicked before going to the cardiologist because my boyfriend couldn't take me so I had to use medical transport. They sometimes don't show up. So I was nervous about the transportation and the doctor's visit. Sorry for the late comment I was in the hospital for 10 days. It was a psych hospital where they didn't let us use our cell phones.

The doctors here gave me very severe ptsd, by misdiagnosing and a*using their power. Now I don't go to the emergency. Not even with a fever of 41,2° C degrees. They are more dangerous than pneumonia. But I would feel a lot safer if I knew there was a competent A&E near me. 🇸🇪 Doctors are 99,9% 💩. But sometimes I get lucky, and stumble upon a treasure. I found a primary health care central that are 100% ok (so far). This eases my stress a lot. I've told them about my ptsd, Audhd, etc and they provide me safe and competent care. They didn't magically know exactly how to adapt health care to me. But they do know the magical key to success: Just ask me.