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Dealing with medical professionals

I've asked for advice about talking to my doctors on the forums before, and I've noticed that I'm not the only person here who's had issues with healthcare professionals.

 

It's kinda surprising how hard it can be to get help, even after I've gotten an appointment, not to mention finding a good doctor in the first place.

It can all be really hard to juggle, especially when also dealing with the health issues that actually brought me there.

 

So I was thinking that it might be good to have a place to talk about finding, choosing, and working with health professionals, find ways to get (even the most stubborn or apathetic) health professionals to actually listen, and just generally to share experiences.

 

Because when it feels like even your doctors have stopped caring or given up; support, validation and suggestions from others can make a really big difference.

Re: Dealing with medical professionals

That's such a great idea @Tiny_leaf! Agreed! It can be so hard to work up to finally want to seek help and then the process can be so hard sometimes which can feel discouraging!

I remember many times even encountering rude receptionists can discourage you or make you feel embarrassed or upset. But it is still so important to be able to get the help you need so this thread is an amazing idea for anyone that has any questions, or needs someone to talk to before, during or after the process! Smiley Happy

Have you managed to find a good doctor for yourself yet @Tiny_leaf?

Re: Dealing with medical professionals

@Puppies026 definitely, especially when people only seem to want to help patients with easy to solve problems.

 

And I have a good chiropractor, and a booking to see a hopefully good rheumatologist.

Plus I've finally "escaped" from the terrible therapists I was stuck with for a year and a half.

But my gp's response to me saying that I had extreme joint pain made worse by exercise was to suggest exercise, and I've had to essentially guide him through the diagnostic process so far; so he doesn't fill me with confidence....

Re: Dealing with medical professionals

I just remembered!

This: https://blog.spoonieliving.com/tagged/dealing-with-doctors

Is a really good blog, and it actually has a dealing with doctors tag which is where the link will take you.

Plus heaps of other resources for people with chronic illness and disability.

Re: Dealing with medical professionals

@Tiny_leaf  This is such a great thread!

I was thinking about it and I feel that one of the most important things about seeing a medical professional is the trust that I have in them. If I like and believe in the medical professional, then I am more likely to be motivated to do what they tell me to do and listen to them. I feel like a lot of treatments just won't work unless the patient and professional trust each other.

Good professionals should do things to establish trust from the beginning and show that they are interested in the patient and want to listen to what they have to say. It's not a good sign if a professional blames you for your health problems or makes rude remarks. If they speak over me or raise their voice, then I would want to see someone else.

Some more red flags I have seen which I haven't discussed before on here:
- The professional omits crucial information from their reports. The crazy doctor I saw asked me what my symptoms were and I said that as well as pain, I was experiencing sensations such as numbness and tingling. But then she wrote to my GP and said that I denied experiencing these symptoms. I think that she omitted this information because they didn't fit with the diagnosis that she had already decided for me. No professional is immune to confirmation bias. Another variant of this is that the doctor omits or tries to hide the fact that the symptoms developed after a procedure or treatment they performed.
- The treatment is trademarked, or must be taught through courses run by the inventor's own people. I'm talking about treatments such as these. The same doctor tried to make me pay for these kinds of treatments. It's easier to spot these kinds of treatments if the doctor says things like, 'Only certain people practice it' or no other professionals seem to have heard of it.

Re: Dealing with medical professionals

@WheresMySquishy I agree there, the most helpful health professionals for me are the ones that I feel safe around.

 

I really like professionals who explain what they're doing and why they're doing it.

 

I'm also way more likely to trust people when they tell me the risks of what they're doing, rather than being all poetic about it.

The tablet that was supposedly a really good solution to my period pain ended up making it way worse. Like, I can't even describe the pain but it involved a lot of hyperventilating, curling up and tension headaches. Not. Fun. If I'd been told that it was a potential side effect of that particular medication, I would've been quicker to stop taking it, and more enthusiastic about trying a new type of tablet. 

The new tablet helped so much with the pain (but interacted with my anti depressants - which no one bothered to tell me Smiley Frustrated It's all sorted now though)

 

Also confirmation bias is the worst. Especially when it's mixed with stuff like diagnostic overshadowing... 

I've had psychotic symptoms misdiagnosed as a feature of autism because "Being diagnosed with psychosis has... implications." (1. Autism doesn't cause hallucinations   2. Psychosis is a set of symptoms not a diagnosis in of itself)

Re: Dealing with medical professionals

@Tiny_leaf  I agree with you! Explaining the risks of a treatment is part of making sure that the patient has informed consent. It also helps the patient to know what is normal and what isn't, what to do about it and when to get worried.

That's so rough! Something similar happened to me when I was younger. I was also put on a particular type of pill to help with my periods and other symptoms, but my periods got very heavy (not to be graphic, but it was kind of like a tap being turned on) and painful (I'm talking one of the most painful experiences I've ever had) while I was on it. Some days, I just had to stay in bed. I was low in iron and it was too exhausting to do anything. It was crazy going through exams while trying to deal with these side effects at the same time. My gynecologist was sympathetic and worried, but my dad didn't understand and just thought that I was overreacting or that this was normal. Like you, I had no idea that it could have these kinds of side effects and I ended up switching to a different one which didn't give me these symptoms. I can imagine how unpleasant it would have been for you.

I can understand what you mean. It must be so frustrating. Smiley Sad I once volunteered with a psychologist who dismissed almost everything as being autism-related, even symptoms that were not on the criteria for an autism diagnosis. She would insist that all her clients had autism, even ones that were referred for an unrelated reason and didn't satisfy the tests for autism. She claimed that she could diagnose autism within seconds of meeting someone. If you needed something explained clearly and not vaguely, it mean that you had autism. If you liked to daydream, it was a sign of autism. If you were initially being treated for trauma, it was actually autism instead. If you fidgeted uncomfortably, it was a sign of autism. If you were messy, it was because you had autism. If you were LGBT, you had autism. If you were smart and got good grades, it was because you had autism. She would claim that 'female autism is different from male autism' and decades of research about autism was wrong because it was carried out years ago by men. She was actually autistic herself and was obsessed with trying to understand herself, which she tried to push onto her clients. She actually fired me because she accused me of being autistic and therefore I wouldn't be able to do the job properly. I told her I had previously seen three psychologists, one psychiatrist and a paediatrician with expertise in autism and none of them had said anything about me having autism. I had also taken the tests for autism for my own self-interest because I did a lot of university work on it and my results all came back as being in the normal range. She said that this was because I 'must have been misdiagnosed' and that the 'tests were wrong'. I was actually good at the job, but I wasn't taught how to do a lot of things that she wanted me to do and they went beyond my training and experience. Rather than taking the time to train me, she dismissed me because she figured that I would never be able to learn how to do those things due to my 'autism'. This is despite the fact that her boyfriend, who she replaced me with, was autistic. I'm still bitter about it.

Re: Dealing with medical professionals

@WheresMySquishy ow ow ow...! Turning into a tap is very much not good....

I didn't get that so much, but at times the pain was so intense that I'd throw up or get vertigo...

 

 

Wow... that's..... at least I actually had autism.....

She's found actual facts and then twisted them beyond recognition....

If you don't want to hear a rant correcting all of that... stuff, please just skip to 11....

 

1.) Needing something explained clearly and not vaguely, means that you had autism

     - it can suggest autism sometimes and in some people. It can also be a sign that something wasn't explained properly. It can be a sign of both.

 

2.) She claimed that she could diagnose autism within seconds of meeting someone.

     - ... I have no words to describe my disappointment in this random stranger...

 

3.) Daydreaming can be autism, ADHD, boredom, being an author or just liking to daydream

 

4.) Autistic people often do show signs of trauma. But not all autistic people are traumatized and definitely not all traumatized people are autistic.

 

5.) If you fidgeted uncomfortably, it was a sign of autism

     -Autism, ADHD, sore legs, being uncomfortable, being a human...

 

6.) Autistic people are more likely to be LGBT. But not every LGBT person is autistic!

 

7.) If you were messy, it was because you had autism.

   -Autism, ADHD, being unorganized, being an artist...

 

8.) Male and female autistic traits are perceived differently by society, resulting in different behaviors being reinforced. Smiley Frustrated 

Stereotypical autistic traits tend to be considered more acceptable in AMAB people, so AFAB people are often forced to hide them. That doesn't mean that there are two types of autism, it means that people can be sexist.

 

9.) Some autism research is a bit.. dodgy. That has more to do with the fact that it was done by people who weren't autistic, who also had a set view of autism as a terrible illness, and also were unable to understand people whose minds work differently.

That does not mean that all autism research is null and void, and has nothing to do with the gender of the researchers. 

 

10.) But... but she considered herself able to do the job even though she's autistic....

Wow she's a rather ableist disabled person..

 

11.) You're a wonderful, kind and empathetic person. You seem better equipped to do the job than many psychologists I've met.

 

12.) She made a mistake by replacing you... I'm so sorry you had to deal with her....

Re: Dealing with medical professionals

@Tiny_leaf  Thank you so much for the kind words. It means a lot to me because what she said made me feel like I had something wrong with me. Not that there's anything wrong with autistic people, it was just that that she never thanked me for all the things I did for her and seemed to find fault in everything I did, even though her colleague who I was with most of the time thought I was doing a good job. I felt really self-conscious about what she said. Especially because she told me that I was incapable of feeling compassion because I was apparently autistic.

I agree with what you said and I think a lot of the things she took as signs of autism could actually be indicative of other things. I think she had a lot of weird views, such as believing that autistic people shouldn't work, despite the fact that she and her boyfriend worked. I think what she did was more about jealousy and trying to put someone down. It came across as unsolicited and discriminatory. Also, the majority of my work was just scanning and uploading her files and dealing with their software and network, so I'm not sure why she needed a non-autistic person to do that. Her colleague felt sorry for me when I told him what happened and tried to stand up for me. He tried to ask her to let me keep volunteering (there were a lot of things that I could have assisted with), but she refused. I think it was their loss because I was doing the most work out of all the volunteers. Luckily, other places I've volunteered with haven't been like that.

Re: Dealing with medical professionals

@WheresMySquishy deep down inside I'm angrily flapping my hands at her...

Not only are you pretty compassionate from what I've seen, but actually autistic people absolutely can be as well! We're not all like she apparently is... Smiley Frustrated

 

And.. wow.... she has some very deeply ingrained ableism that she needs to sort the hell out..

There's a kinda... sub-group of the autistic community that take a lot of pride in being "high functioning", and see themselves better than both allistics and "low functioning" autistics, she kinda reminds me of them...

I'm so sorry you've had to deal with that...

 

I'm glad that the other places you've been have been better though!