Fear of doctors
Hi, everyone. Over the years, while trying to get help and a diagnosis for ME and my other health issues, I have developed a full blown terror of GP’s. I have panic attacks in the waiting room now and absolutely devastating white coat hypertension. So many times I have been dismissed, laughed at, given incorrect diagnosis and procedures, some very painful and that made me worse, been treated with disdain, (especially so since I started to put on weight) verbally tongue lashed and even shown the door that I am now so frightened of doctors it’s become very debilitating. I avoid going unless I absolutely have to. Whenever I see I gp I tell them I’m afraid of doctors, (is that the wrong thing to do?) but I dare not mention my ME (I have official diagnoses of psoriatic arthritis, paroxysmal afib, fibromyalgia and “chronic fatigue syndrome” all of which took decades to get). But every doctor I see has the attitude that ME is still all focused on brain chemistry, I just get asked how much exercise I’m doing and if I’ve tried antidepressants. I’m housebound now and gradually getting worse. They don’t believe me that it’s that bad. I feel like I should be stronger than this but it seems like PTSD to me. Just thinking about going to the doctors gets me into an anxious state. Can anyone offer advice? Or relate? Am I the only one dealing with this? Also isn’t it my absolute right to decline treatments, tests or procedures I don’t think are right for me without being literally shown the door out of the doctors office?
@Siren You need to find the right doctor/s.
I think we've all experienced what you're describing to some extent.
And it doesn't help piling on top of what you already have to deal with.
Wasn't Emerge compiling a list of supportive physicians??
@Royal-Flash I wish so much for a list of supporting doctors, it would be a dream come true to find one. The only doctor who ever took me seriously was an ER doctor who ran every test she could think of to explain my dreadful fatigue. She was so awesome. I felt listened to. Of course, she found nothing in her tests but it’s more than any GP I’ve ever seen has done.
@Siren Unfortunately there is no magic pill.
All the blood letting is just to exclude everything else.
You have to become the expert on your own condition. Which is a challenge because the goal posts keep moving.
Get a copy of the booklet I referred to.... compiled by 26 international physicians and researchers...to the point, and easy to read. Symptoms described and pharma and non-pharma options suggested.
It's a start until you find a suitable doctor.
@Royal-Flash which booklet is that?
Myalgic Encephalomyelitis: International Consensus Primer for Medical Practitioners (2012).
Second one down (brain and spine on the cover).
@Royal-Flash that’s a great booklet but I would never have the courage to hand a doctor that long tome and ask them to read it. Thing is I believe if they are interested enough to do that they would have already. I tried handing a printed list of symptoms for diagnosing CFS to a dr once, simply asking if we could discuss them because I believed I had them all and possibly had CFS. He screwed up his face, wrote me a referral to a psychologist. When I asked why, he said that was the first line of treatment for CFS and if that didn’t help he’d “consider” doing something more for me. I said I couldn’t get there, it was too far for me to drive and I asked for a referral to one closer to my residence. He actually laughed and said what? you can’t even drive to “such and such” . Well I was flummoxed. Wasn’t that the whole reason I was asking for help? I just walked out. That was admittedly 10 years ago. Now I can’t drive at all. I never went to a psychologist, never had the energy to spare
@Siren Stark contrast to one of my good GPs....she wanted a copy of the booklet after seeing mine. I got her a copy from the local society and they said the GP had actually contacted them looking for a copy.
Some dismiss it as a brain thing.
Some accept it and want to prescribe big doses of prednisone, cortisone injections, ketamine infusions etc.
Some accept it and cautiously proceed with low doses of low impact meds....a try it and see approach...trying to avoid compounding the problems with side effects.
I am fortunate to have encountered 4-5 of the latter. My present GP and rheumatologist are excellent and my quality of life has improved greatly through their input.
I did lodge a formal complaint with AHPRA because of the behaviour of one doctor.
It would appear the single biggest thing to help us is a list of supportive doctors and a list of those to stay away from.
@Royal-Flash that is great news, I’m so pleased to hear that that is even possible and it does give me some courage to keep trying. So thank you for that. I have a good rheumatologist, at least I thought I did, he listens and is very sympathetic, it’s only GPs I have a problem with, but he simply says he can’t treat fatigue, and anything that has been tried has limited results, he just advises me to stay within my limits ️ Then I go to a gp and they say push myself ugggggh
@Royal-Flash The U.S. ME / CFS Clinician Coalition, a group of U.S. ME / CFS experts, has authored an updated 2020 handout on the basics of diagnosis and management of ME / CFS: https://drive.google.com/file/d/1SG7hlJTCSDrDHqvioPMq-cX-rgRKXjfk/view.
This handout is supported by OMF (Open Medicine Foundation).
@Royal-Flash Just as a PS...we focus on the physical side of this but it also wreaks havoc with our mental state.
The loss of our former life, being doubted...even by family, what the future may hold, financial issues etc.
It may be worth while seeing a good psychologist who can offer strategies to deal with the internal and external problems. I do. For example, one of the first problems to sort out was my insomnia due to anxiety and pain. He taught me the 'progressive muscle relaxation technique' which works very well for me. You do need to find one that you click with though.
A distanced, formal, sterile relationship won't work.
In terms of doctor education (and there's no question this is a huge challenge still), Emerge have an accredited GP eduction module (the "accredited" means that they get 'points' for doing it that they can put towards a points total they need for ongoing accrediation or something - I'm afraid I'm not on top of it). There's mention of it, and other resources, through the link below - just in case it's useful for the future.
As well as that, the US CDC's site is now pro-pacing/anti-GET,
There's a review going on in the UK, but all being well the guidelines over there will be updated to move away from the psychosocial model as well. Once that happens, with patients being able to point to both the US and UK mainstream guidelines, hopefully Australian doctors will be easier to bring around. That being said, I totally understand a fear of new doctors. I always brush up on me ME/CFS facts and resources before seeing one (and, in future, I'll be giving them the information in hardcopy format and possibly electronically, so there's a trail). It doesn't always work, but at the very lease it provides evidence if a complaint is necessary.
@Royal-Flash of course, you are right, and people always assume that because I haven’t seen a psychologist that I haven’t worked on that side of things. But I have. My father and his mother both had this disease. I won’t go into what they went through, and how they were treated, and I have had this thing since I was at least 10 years old and I’m now 62. I rarely managed a full week at school when I was a kid, ever. And have never held down a full time job for more than 12 months. To say I would not have survived without researching and implementing ways to cope and manage my symptoms over the decades would be utterly non sensical. I raised two children, that was hard, I spent every weekend in bed when they were young, and I qualified as a personal trainer and older adult trainer at the age of 46 and worked part time for a physiotherapist in their exercise centre. I did that even though it was hard. There is no doubt that exercise helped me back then but something broke completely when at 50 I suffered a series of stressful life events in a row AND pushed myself to keep working and holding together my cherished routine. Physical therapy to meditation I have done and still do it all. Meditation, and getting into a very deep state of relaxation, has helped me the most. Really, to sum things up, the thing I need most from GPs is understanding of how my life is effected, validation that I have a physical illness, not depression or that I am lazy, or “just making excuses”, yes I’ve been told that. And just to be not treated with such disregard would be very helpful.
@Daffy_Dave thank you. I’m hanging in there for this to happen, believe me. My dearest wish is for a diagnostic test. I long for that day to happen. I’ll be first in line. To be treated with some care and dignity that is what I need to fix my fear of doctors, though I don’t think I will ever trust them completely, that’s a leap too far. Thank goodness for Emerge Australia. I don’t feel so alone and hopeless these days.
@Siren Hi @Siren. You are not alone on this journey. I am so sorry your experiences in trying to get help have left you with a fear of doctors. You have the support of all who suffer from ME/CFS and all the researchers and medical scientists working towards unravelling this illness. What you have experienced, has been felt by many in some shape or form. I can relate to your anxiety and I am giving you a cyber hug right now. Anxiety is real and debilitating.
One way I approached my medical needs, especially in seeking a new GP after moving regional, was to attend my first appointment with an advocate. I found that having a support person to help me communicate my needs to the GP helped me immensely. The very first appointment was to discuss if the GP was able to take on my overall medical management. I was armed with all the medical reports and data I had to date from previous doctors and a written general history. I asked for a regular monthly visit. At that appointment, the doctor was either on board or not. My relationship with my GP and any other GP I may be assigned, as they tend to move on a lot, is aware that my patient needs are management related and that their role is to facilitate the ongoing specialist referrals, maintaining the medical file and regular reporting on my condition. I know this all sounds dandy, but it is extremely difficult to establish a good doctor/patient relationship in the best of times, let alone when you are suffering ME/CFS. I hope and wish this forum gives you the courage, support and advice to work through these issues. I'm putting the kettle on now ...do the same and will have a cuppa.
The link is to the 'Statement of Principle' for CFS. An SOP is what is used to determine the eligibility of ADF members for compensation when injured. They are developed by a committee on advice from physicians and researchers.
The point here is that an insurance company is prepared to pay compensation to someone who has developed the condition during their service.
An insurance company (Comcare ie. the Gov) recognising that the condition exists and is compensatable is about the highest level of proof you can get.
Any physician who claims the condition doesn't exist is defying the official line and insulting all those that developed the SOP.
The SOPs are not perfect but that's another matter.
Thank you for your post. I am so sorry you are struggling with this.
I am getting to that point with anxiety and terror and drs, too.
Actually I avoided them for years and then in the last 12 months or so I have started reaching out for various things, and it's proving a progressively awful experience . I recently saw a Rhuemy and pretty much had a near panic attack. The dr wondered if i had issues with 'being touched' but it was my dr terror, which i didn't realised til hours later had kicked in so strongly.
It's really tough for me at the moment especially because i wish to plan for a baby and i'm concerned about my fertility. i have been to the gp 3 times for a referal to a gyno and he just keeps saying 'next time'.
i have been accused of 'abusing the system' by another GP because i was seeking bulk billing (I am on the DSP), which they offered for people on conc. cards, but then later changed the policy without informing me.
anyway these are minor events on a journey littered with disrespect, dismissiveness, judgement and ignorance, as i am sure you are well acquainted with.
it's really hard. so so so hard. these are people who are supposed to be concerned with our care and instead leave us feeling like we have no where to turn.
i hope you find the right Dr for you. i hope my post didn't bring you down i'm just struggling a lot with the same thing.
i have googled around for some other Drs (GPs) and they seem good on paper, but the out of pocket is $100+ per appointment which is way out of my current budget.
If i didn't feel so vulnerable i would be making formal complaints about all the horrible things i have experienced by a disturbingly large number of medical 'professionals'. But then i would be 'that' person who's making all the complaints. I really hope things change! it's utter cruelty and our stories are sadly not unique at all.
I wish this could go out to ALL GPs Aus wide!
Wow i just read this post again @Siren and its beennsome time, i literally wondered if it was ME that was the original poster as i literally could have written that almost word for word.
Im experiencing some anxiety around this again at the moment.
Mainly because they found ‘subclinical’ thyroid issues in my bloods and pending review testing of course they want to chuck me straight onto meds, rejecting my questions about if diet and lifestyle can have an effect?!
Did you end up finding someone that you feel safe with and that treats you with dignity @Siren ?