Dealing with medical professionals

I agree that it is very difficult to find good medical specialists too. Nowadays medicine is terrible. When I was urgently told to donate blood for analysis, the phlebotomist girl kicked me out, although the referral was written URGENT! And later, when I went to my family doctor, the same girl punctured my vein, although my veins can be seen perfectly. The hematoma on my hand didn't go away for almost a month! Could our care workers take a good course of study? I even searched the Internet for phlebotomist training programs, and I found this one for example https://www.exploremedicalcareers.com/healthcare-administration/.
Where does the clinic management look when they take such specialists? I'm very angry!

Hey @helenalancaster,

That sounds like such an awful experience, I'm so sorry you had to go through this. It's fair enough that you would feel angry after all of this has happened.  I hope you have better experiences in future, it can feel so vulnerable when seeing doctors/medical professionals  

I've also just sent you an email to look out for. 

Hey @raffaelle sorry to hear you've had some bad experiences with medical professionals, you're right that it can be really hard to find one you connect with and the costs can make things so hard  did you want to chat about what kind of support you're looking for?

@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  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)

@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. 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.

@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.  

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....

@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.

@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... 

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!

I've finally figured out a proper list of good and bad traits that I've noticed in my own doctors!!

I think having put the effort into writing it out actually helped me understand in words some of the really obvious stuff that I might have forgotten to look for in appointments.

Anyway, in case anyone else might find it (in addition to everything @WheresMySquishy has said) helpful, I've put it here:

My most helpful doctors:

Are respectful towards me

   • Acknowledge that I know my own mind and body

   • Respect my gender and try to use my pronouns

   • Address me, not my parents, during my appointments

   • Get my permission before touching me

   • Respect my right to self-determination

Are professional and helpful

   • Offer more than one option

   • Suggest ideas I wouldn't have thought of

   • Admit it when they make mistakes

   • Validate my feelings and acknowledge the impact of my pain

   • Know what they're doing

   • Think outside the box

Are happy to share ideas and information

   • Let me know what they're doing (before they do it)

   • Give information about my conditions and treatments freely

   • Are happy to learn new things

   • Genuinely try to answer my (sometimes endless...) stream of questions

   • Like having a patient who has some background knowledge 

   • Listen to and seriously consider my ideas 

   • Tell me what they're thinking (in terms of my illness and treatment, not what they want for lunch..)

My least helpful doctors:

Are dismissive

   • Ignore my concerns, questions and comments 

   • Act bored/ disinterested during appointments 

   • Habitually downplay my level of pain/ distress

   • Discriminate against me (eg. assuming I'm exaggerating my pain levels because I look female)

   • Lose interest in anything more difficult to solve than a sprained ankle 

   • Act bored or disinterested during appointments

   • Assume that my conditions are only mild (and refuse to actually check)

Like being the one in power/ with control 

   • Only give me one option (if that)

   • Ignore my suggestions

   • Refuse to review diagnosis/ treatments

   • Try to maintain a power imbalance

   • Set goals for me, not with me

   • Become uncomfortable or annoyed when I use technical language

   • Blame me if there is no improvement

   • Focus on their own priorities, or attach their own values to me

   • See me as a puzzle that needs to be solved

   • Expect me to be compliant, even if it will be bad for my health

@Tiny_leaf  I think that's a really helpful list!

I think another good trait in a doctor is that they don't treat their patients differently on the basis of age when trying to make a diagnosis. Particular ages can make a diagnosis less likely, but a diagnosis usually shouldn't be ruled out on the basis of age alone. I have had some medical issues that are more common in people twice my age and it can be hard for people to understand what I am going through or find other young people with the same problems. At the same time, a doctor shouldn't be insensitive or try to make the patient feel bad about themselves if something is rare in their age. A doctor once said to me something like, 'My mother is in her eighties and your body is worse than hers'. That was hurtful. I have also heard doctors say things such as, 'They're just being a typical teenager and exaggerating or refusing to comply with their treatment'.

@WheresMySquishy oh my gosh yes!! 

Two of the more likely conditions that are causing my pain are more well known in 40 and 70 year olds.

I think my gp has decided I'm a "lazy teenager not  exercising enough" rather than "maybe we should look into this" 

Also, a doctor who doesn't treat you differently based on your weight/ BMI.

I've heard of people who were bullied in ED recovery because they were naturally larger than their peers, or people whose illnesses were missed for too long because the doctor assumed that they just had to lose weight.

If you ask for help managing weight, that's one thing, but different people have different bodies, and your doctor shouldn't be making you feel ashamed of it. 

Aaand for those of us who present as or are assumed to be female, it's worth finding a doctor who isn't sexist..

Unfortunately prejudice exists in the medical field, which is worth keeping in mind if you're part of a group that is discriminated against.

@Tiny_leaf  I think you touched on a really serious issue. I have heard a lot of people with eating issues or other kinds of health problems having experiences where a doctor or service has told them, 'We can only treat you if you're a certain weight'. I think this is really dangerous. There should be more of a focus on preventing people from getting worse or developing health issues, rather than only treating particular kinds of cases.

Doctors are also very quick to dismiss health problems as being weight-related and often refuse to investigate to see if there are other causes or factors.

Women have also been discriminated against for decades when it comes to medical matters. I think a lot of doctors see women as being more neurotic or as being more likely to be hypochondriacs.  I've read a lot of news articles where mothers have told doctors that they think that there is something wrong with their child, but they get written off as being 'an overly concerned mother', only to later discover that their intuition has been correct.

@WheresMySquishy exactly.

I'm small enough that I don't have to deal with the @*$& that a lot of larger people have to deal with, but still a little above average.

I might've actually had an eating disorder, but no one looked into it because my weight was "perfect" even though I was starting to get sick from it. 

(which is the story of how my friend ended up being the one managing my symptoms. It got me eating again but was not a healthy solution at all and I'm glad we aren't still dealing with that. If that's going on for you, get help. Try headspace or the butterfly foundation)

And yup. Because I'm presenting as female for now and have a mental illnesses, I have to fight twice as hard for my concerns to be acknowledged.

Even then being brushed off is fairly common for me.

Now I try to know a few of the more likely diagnoses, the common misconceptions about those conditions, and truckload of facts. Whenever I hear.. you-know-what coming from my doctor's face, I find it useful to pull out one of those facts.

Plus it makes frustrating appointments a whole lot more amusing, like so:

Doctor: In the meantime, try exercise.

Me: That makes the pain worse. And it's not caused by normal DOMS (the thing he'd been hinting at), it has a different onset period, effecting me immediately after exercise and continuing for the next few days or even week. 

Also I have experienced parallel to DOMS, and the two feelings are very different.

Doctor: 

Idk, I just find it funny when people realize that not only were they talking complete crap, but they know that I know and have to now think about what they say.

Plus I find knowledge and unnecessarily large words a really good way of dismantling obviously faulty ideas. 

@Tiny_leaf  That's so frustrating! I'm sorry you had to deal with that.
Also, if you have to walk with a cane most of the time, the problem probably isn't caused by DOMS. Who has to walk with a cane after DOMS? Maybe that doctor should go back to reading his textbooks...

Have you heard any stigmatising or insensitive language used by doctors?
My favourite examples of this are: 'The patient failed treatment' (meaning that the patient did what the doctor told them to do, but it didn't help) and 'demented' (used to describe patients with dementia or impaired cognition). There are a lot of other examples, especially with weight and mental health patients.

There are lots of things that medical professionals do that are pretty insensitive. My mum told me about a woman she saw who had a miscarriage, but she was put in the same section of the hospital where the births were taking place.

@WheresMySquishy freaking exactly!!

Plus then there's the assumption that I've somehow made it 17 years with no idea what DOMS feels like as though I haven't exercised before.

I do horse riding, I absolutely know what DOMS feels like. 

And I can't think of any examples of the top of my head, probably because my treatment team never actually spoke to me about how things were going. 

But definitely I've had it implied that it was my fault nothing was working, that random issues were caused by me being autistic (while the problems that I actually had were ignored).

Not so many clear statements, but a lot of stuff was implied.

(assuming it's DOMS and I even can exercise suggests that I'm too lazy to exercise, too stupid to recognize DOMS, and that I'm so sensitive that DOMS makes me freak out and act disabled)

Actually, there was being told that having a cane would make me look and feel disabled, which wasn't great..

It suggests that I wasn't already disabled (believe me they don't give out NDIS plans unless the person is definitely disabled in some way)

It suggests that being disabled is a choice made by getting accommodations. 

It suggests that being disabled is shameful

It suggests that people's opinions of me are more important than my health and wellbeing

It suggests that my gp is more concerned about how I look than how healthy I am

It suggests that canes can't be ✨fabulous✨ 

It suggests that I'm ableist enough that I'd endure immense pain rather than look disabled

Thanks for starting this thread @Tiny_leaf and thanks @WheresMySquishy for your insights too! I think it's a great idea to have a space where we can reflect on our experiences of working with health professionals (both positive and negative). It sucks that you've had some not-so-great experiences, although it sounds like these experiences have given you a good insight into what's helpful and what's not. I really like the list of what's helpful and what's not helpful. This should be essential reading for all health professionals IMO! 

@TOM-RO definitely, I kinda wish that doctors-in-training had to sit through a lecture of just patients complaining (and also sharing what helped).

@Beautifullybroken  That's so true! One of my family members is currently seeing a professional who doesn't seem to understand that they aren't benefiting from the treatment, even though they have expressed this multiple times. Their symptoms actually get worse as they do the treatment. But the professional just keeps making up various excuses for it not working and getting them to persist with it. They don't seem to get that some people just don't respond to certain treatments.

I had one professional ask me every time I saw them, 'Is this helpful or unhelpful?' I think more people should do this.

I agree @Beautifullybroken @WheresMySquishy.

Responses to me saying that something isn't working can range from "okay, let's try something else" to basically "yes it is"

You might be able to guess which one I prefer.. 

Guys!! Health direct has a question builder to help prepare for appointments!!!

It actually seems pretty easy to use, and has preset questions that you can choose from which is good if you struggle with putting together words.

https://www.healthdirect.gov.au/question-builder

@Tiny_leaf  Thanks so much for this! It's so useful, especially as I'm seeing my ophthalmologist tomorrow (great timing!)