Why won't they listen

[seboley]

I went to urgent care the other day because I have horrible reactions to cold sores. Never had one before all of the Fibro stuff started but for the last 11 years, I get one about every 6 months while on medication to suppress. When it happens I get wide spread swelling and pain. This time was worse. I got a fever and the pain was so much more intense then I am accustomed to. My head felt like an overfilled basketball, busting at the seams, my body felt like I had an all over Charlie horse, my jaw was swollen to the point I couldn't open my mouth very wide and there is an area that I believe is the lower facial nerve that becomes inflamed. So, this is what I am trying to communicate to the doctor but attempt to simplify it because there are so many different factors. Mind you I was diagnosed with fibromyalgia in the same clinic the urgent care was in. That is why I went there. Anyway, I tell the PA I have fibromyalgia. She rolls her eyes and sighs. I tell her I am in pain. She dismisses me. I tell her that I am in so much pain that suicide had come to mind overnight while I was laying there with a fever. She doesn't say anything. Just looks away and presents body language consistent with 'I don't have time for this'. I loose it! I tell her about her dismissive attitude and bullshit. I am not calm about it. I am sure everyone in the waiting room could hear me. I tell her I am leaving without treatment. She tells me she believes the swelling and wants to give me steroid treatment. Against my better judgement, I stay because I am not really in a great place to be driving myself around town to get treatment. She tells me to open my mouth to look at my throat. Then gets frustrated with me when I can't get it open very far. She jams her finger into the facial nerve and gets snotty with me for wincing, "I have to examine you" she says. She then proceeds to tell me that there may be an underlying condition. "You know there are some viruses that cause this kind of reaction". No F**king S**t, really? "You mean like Ebstine Barr", I said. She feels like we have common ground and launches into a whole discussion until she looks up from her paper to see my face staring at her with a look of distain. Did she really think that in 11 years, thousands of dollars and numerous doctors, they hadn't looked at that yet? Could she have possibly been that arrogant? You're a flipping PA and you think you have answers that I haven't gotten yet? Oh, I was beside myself. I am still very upset about it. It all took place on Tuesday and I just can't stop obsessing. How could anyone treat another human like that? I have had doctors that don't agree with the diagnosis. I understand. They can't test like they can for others. I get it. We can talk about the issue another way. They (the doctors) are the ones that gave me that name for my collection of symptoms. I didn't choose it and I am not always convinced it's right but it's what I have to work with. How the hell are we supposed to communicate with people that won't listen? Additionally, what the hell actions can we take when this type of issue occurs? I don't ever want to experience this again. I don't want anyone else to ever have to go through this. It is dehumanising.

 

[sunkacola]

Hi seboley,

Sadly, your experience is not uncommon. Many of us here can relate all too well to what happened to you and I am one of them. It is humiliating, furious-making, crazy-making and is enough to make you sicker than you already are. that woman should clearly not ever be in a position like that, as what she did was highly unprofessional not to mention rude, unkind, and patronizing.

Here is what I have learned to do when that happens.

First, I do what I can to calm down. Making a fuss at a clinic ( and yes, I have done that!!) has never gotten me anywhere except worse treatment than before, because now they are all convinced I am crazy or a hypochondriac or a troublemaker, and will dislike me and never believe what I say.

Then I go home and go online and I write a very bad review for that clinic, and I name the individual who treated me badly. You have to make this SHORT and to the point. If you go on and on no one will read it, trust me. So I would say something like:
----- ___NAME___ treated my horribly, caused me pain on top of what I already had, would not listen or believe what I said and in general was extremely unprofessional, rude, dismissive, patronizing and unkind. I recommend staying far away from this clinic! -----

Then, remind yourself that holding on to the anger and humiliation will only hurt you, and feeling anger and resentment is very stressful. Stress makes all symptoms of fibromyalgia worse. It is for your own good to find a way to let this go and put it into your past as soon as you can. If you need to tell a couple people about it in order to do that (sometimes repetition of the incident can help us let go of it), then do so. But don't let that carry on for more than a couple of days because it doesn't do a thing except hurt yourself.

If it will help you in your effort to work it through and let it go, you can write again about it here.
We are all supporting you and are here for you and many of us know a lot about how being treated like this feels.

 

[Forgetmenot]

Sunkacola is right you know him,
I can’t imagine having to deal with that on top of fibromyalgia,bless you, But yelling at staff isn’t going to help,it’s just going to get you Labelled a troublemaker,
Plus not all dr and nurses have experience of everything we walk in with ,Do complain .Do have the right for better care,and do believe we do understand your. Sheer frustration,As most of us have had that dr who looks at you like your a liar.Every dr in my practice tells me about fibromyalgia and I had that nearly 20 years. Even my own dr at times is so busy he starts to talk to me like I’m new to it all,
I wanna slap him and say oi mate wake up,
But you can’t ,and here where I live if I had shouted at staff if of been banned there and then and prosecuted.
So when your not in so much pain ,go find someone who does understand you ,and yes I no that isn’t as easy as said xx

 

[Auriel]

I’m so sad for you @seboley your post reads like a horror story but I know (from personal experience and reading others posts) how people sometimes get treated by medical professionals, I’ve also experienced the eye rolls and grins between nurses, been told the pain is ‘all in my head’ been nicknamed ‘the lazy git’ by my own “so called family” for my condition (but there’ll like it about others too so it’s not personal) and also on my worse days got told (by someone in an apparent supportive role) I’ve got too much time on my hands like w.t.f ????, in some of my experiences certain medical professionals have been some of the most narcissistic/gaslighting people going! I understand how others actions can leave you with resentment and pain that’s hard to let go of but yeah maybe make a complaint (its justified after all) put a post in a newspaper or online? your a person that has every right to be treated with kindness and respect. others actions are just that? internal anger or stress will only exacerbate the fibro symptoms (we don’t want that for you, its horrible on the best of days!) even if it’s just a tiny consolation we understand how unjustly fibro sufferers are treated sometimes

 

[seboley]

I kept doing the next step till I felt like I had adequately addressed it. The negative feelings lifted when I called in and calmly explained their error, resulting liability and the fact that I knew it was a reportable offense to the licensing board in our state. I wasn’t confrontational and I wasn’t mean. I just requested that they use it as a learning experience. Will they? Who knows but I feel like of done what I could and at least got the medical director’s attention for a moment. I also talked to my neurologist about it to see how I could communicate it better in the future. He said there wasn’t much I could do if she wasn’t going to read my chart. He suggested asking for another doctor.

 

[sweetkamie20]

Listening to your story reminded me that I don't have the energy to try and persuade anyone to do a good job. I think I have given some clinics the benefit of the doubt too many times...