
So, now we have to fight for respect as well!!
A few days ago, a You Tube video was doing the rounds on Facebook. It was not something that I had seen before, never having been a fan of “The Golden Girls.” But, when it popped up on my newsfeed, I certainly became interested and err……..angry. Very angry!!
I am going to add the video into this post and even if you have never seen the clip, I am sure that if you are struggling with Fibromyalgia or any other chronic illness, you will totally be able to relate to Dorothy – I know that I did.
Ok, so it’s a clip from a comedy show, but the message is real and happens day in and day out in surgery’s and hospitals around the world. How do I know? Because I hear the stories and over the past 29 years of me battling Fibromyalgia, I have experienced this more than once.
In the early days before my diagnosis, it was suggested that I do more exercise, change my diet, take this pill or that one but essentially, I was told that the symptoms I perceived to be happening in my body, were actually all in my head!! I think that at the time, the reality was the doctors had not got a clue. They roped in a shed load of tests but the truth was they were not any more the wiser than I was about what was wrong with me.
In their defence at the time, this was almost 30 years ago and the closest they had to Fibromyalgia or Chronic Fatigue was termed “yuppy flu”.
However, in September 2016, following my car accident, I was referred to a spinal consultant who was a “Mr” as opposed to Doctor, suggesting that he knew his stuff. This was a man I had never seen before, he knew nothing of my medical history other than what my GP had told him, that I had suffered whiplash injuries to my neck and back.
This, however did not deter him from commenting on my Fibromyalgia, arrogantly telling me that I did not have Fibromyalgia. Fibromyalgia did not exist and most people my age including him got “Fibromyalgia” on a Monday morning when it was time for work. He then went on to inform me that I should settle my injury claim and get back to work – did he ever address my whiplash injuries? That is an emphatic no then. This was left up to a pain consultant who incidentally, was a “Doctor” and who had more compassion in his little finger than the “Mr” had in his whole body.
A few days later, I got a letter from “Mr Consultant” putting his recommendations down in writing and again saying I did not have Fibromyalgia and I should get back to work. Needless to say, I complained big time and thankfully, it was taken very seriously. Following a meeting with the hospital director and the Matron, they assured me that the consultant would be spoken to. I never got an apology as I specifically asked that he not apologise as I knew it would never have been sincere. It seems that nothing has changed in almost 30 years!
Having any chronic condition is a constant battle, so why are we also having to battle those who are supposed to be on our side?
When we head off to see any doctor, be it at a local surgery or the hospital, we go in the hope that they will help and support us. We expect that they will have the answers and know how to treat us. We definitely do not go to be talked down too, ridiculed, disrespected and ultimately dismissed with no real conclusion.
It would appear that when dealing with a chronic condition, they are happy to attribute words such as chronic fatigue or Fibromyalgia. They are also happy it seems to dish out painkillers and anti-depressants but they seemingly have no interest in getting to the root of what is causing our pain, fatigue, inflammation, irritable bowel syndrome and the myriad of other symptoms which may manifest.
Often, patients leave angry, upset, demotivated and with no hope. If we didn’t start out with emotional issues, then over a period of time, this constant dismissal does nothing but cause anxiety and added stress to an already over-stressed body. After one such occasion before my diagnosis, my GP was as dismissive as always and decided to hand me anti-depressants and sleeping tablets with the advice to get more exercise.
I had heard the same crap for 11 years – nobody had anything new to say, nobody could help and I was desperate. So, I went home and swallowed a handful of the pills he had given me.
Thankfully, my husband was on hand and took the rest of the pills from me and flushed them down the toilet. That night I was scared to sleep in case I had taken too many, but the next morning I headed back to the doctor hoping that now he would offer me the support and help that I had been looking for. His response was to shout at me for putting the tablets down the toilet, after all didn’t I know how expensive they were!!! After, I was finally diagnosed and offered the same medication, I made a decision and from that day to this, I have never gone back to see a doctor again regarding my Fibromyalgia and have never taken another pill to try and treat it.
So, now today I heard yet another story. Everyday my Instagram and Facebook feeds are full of people not getting the support and respect that they expect from their doctors. And I think that enough is enough!!
Having a condition like Fibromyalgia is challenging enough without battling our doctors and other medical professionals. It is time that we stood up and were counted. That our voices are heard and that we stop just rolling over and taking the crap. That we resist being fobbed off because our doctors are not interested, don’t have the time, energy or the inclination to find out what is at the root cause of condition. They need to step up to the plate and treat the cause as opposed to writing prescriptions to address the symptoms, which invariably result in causing other symptoms to manifest.
We need to empower ourselves and others to stand up and be counted. To be brave enough and say “if you don’t respect me enough to find out what is truly wrong with me and treat me accordingly, then refer me to somebody that can”.
From today, I am a woman on a mission.
I am committed to doing whatever it takes to reach out to our community, to the medical professionals, to our health ministers, our MP’s, our press, to whoever will listen and work for change. It will mean write letters, starting petitions and make our voices heard and stories told.
But, I can’t do this alone. I need your help.
Firstly, I want to hear your stories and your experiences with dismissive doctors. Please feel free to comment below or you can contact me privately by hitting contact me at the top of the page.
Secondly, I would love to hear your ideas for making our voice heard. So share your ideas, no matter how outrageous they may be – no kidnapping of GP’s allowed though 😉
If you would like to volunteer to be part of a “focus” group for change, please let me know. Don’t worry, nothing heavy just others to bounce ideas off and see how we take ideas and turn them into action.
I understand that you are tired and maybe don’t have the energy to fight – so let me fight for you. I have the passion and the energy, there are those of us who are stronger and will battle on your behalf, but I need your stories.
If this changes the mind of just one doctor and helps just one person get the respect and care they deserve, then this will totally be worth it.
We have a voice, let’s make it heard
UPDATE:
I have received a number of offers of help to raise the awareness of this issue. People who are experienced in patient advocacy, running campaigns, raising petitions and using social media to highlight wellness issues. You can be sure I will be accepting all offers of help 😉 I am committed and motivated to becoming the “heard” voice of chronic illness.
I can do none of this without YOUR stories. I need your personal experiences. Even if you think that in the big scheme of things your treatment was no big deal – if your health care professional made you feel disrespected, dismissed, not believed, like a hypochondriac, a drama queen, silly, small or a time waster then your voice is IMPORTANT and NEEDS to be heard.
So, please click the link below and come on over there to join the “Dismissed” campaign.
Dismissed – The Unheard Voice Of Chronic Illness (DUVCI)
Oh heck, I feel your frustration and I’m angered for you! I am sick and tired of dismissive doctors and so-called specialists; spent 9 years going undiagnosed and getting worse with my health issues, and can’t help but wonder how things would have turned out if someone had listened when I first had problems and sought help, if someone had been understanding and with an ounce of common sense. Fantastic post, very poignant and so important!
Thanks for your reply. You make a very valid point, what would have happened to any of us if we had received the care and compassion that we would have expected? How many of us would have been able to halt our symptoms given the right support and advice? I guess we will never know now!
I’ve had dismissive doctors for 20 years! The worst part though is the actual negligence caused. I nearly lost my life when I collapsed had some sort of seizures/ mini stroke like episodes and heart problems like unstable/ variant angina (could have also been small vessel cardiovascular disease) and ended up in a wheelchair. I was told I was making it all up. Not just to me either. The neurologist told my ex that as well, leading him to leave and take our 3 kids with him. I met my ex when I was 17. I’m now 38. They’ve split my family up. It’s got worse not better. I’m thinking of making a medical negligence claim. Not for money (because what I’ve got- I believe to be an immune system gene dysfunction (ME) which has lead to secondary mitochondrial disease/ dysfunction – money won’t help). What we need is to get our stories to the right people, the authorities & people with power to make real changes. The public (and our families and friends) don’t believe us because the medical profession doesn’t either. That’s what needs to change.
This breaks my heart to read. My first marriage became difficult as a result of dismissive doctors. How can we expect family & friends to believe us when the “medical professionals” do not take us seriously. I am truly helping that if we can get together and get a campaign going, we can raise awareness. Big hugs
I have been dismissed for as long as I can remember, because I am only 22 my symptoms have constantly been put down to “adolescent stresses of life.” Despite the fact 3 people in my family have been diagnosed and I have been going to the doctors for years with these same symptoms. Sometimes I only get a few hours of sleep a week because my insomnia is so bad, but they just tell me to eat regular meals and get an early night. Yeah that makes sense when you can’t sleep. I’m so sick of being talked down too and everything being pinned on my anxiety, last time I went I literally got the condescending “you poor 22 year old with the stresses of life, you are just finding your feet, it will get better.” Followed by “i think you have a mild auto immune disease but your symptoms are too vague to tell.” And then no further investigation.. this is just getting ridiculous now.
I’m really glad you posted on this topic and are ready to fight back against this indignity! Have you signed our petition to change the law to hold these people and their employers accountable and create an enforceable system to protect patients and give us recourse? We’re past 700 signatures now but I know there are many more who have not yet signed or added their stories yet. I am determined to get legislation introduced in 2018 if it’s the last thing I do! I am also putting together a call-to-action video. I’m looking for 3 or 4 people who are willing to have their picture included and a short sentence or two about what happened to them. I’m planning on including statistics on how long it takes to be diagnosed with some of these conditions that doctors reject and refuse to take seriously. Please let me know if you would like to collaborate.
In solidarity,
Pippit
Thank you so much for your comment and also your commitment to fight back. I will take a look at your site and will most definitely sign the petition and help in any way that I can. We are all in this together 🙂
I went to the ER with chest pain. I knew it wasn’t my heart but it was getting seriously bad, progressively so. Started as a sort of sharp temporary pain and progressed into a constant sharp, all over crushing pain. I explained it to him and said I had FM and wanted to know if that had anything to do with it. Well, he proceeded to tell me FM didn’t exist and therefore I didn’t have it. He then dismissed me and my problem as well. No tests no nothing. I was in university, on summer leave, at the time and an two hours away from my primary doc. I made the time to get a lift to him, he did a chest x-ray and found out I had Costochondritis; that chest wall pain that is so common with FM. Rather severely at the point as it was aggravated by my summer job as a baker. He put me on medical leave and high doses of meds. Took me six months to recover. I still get it from time to time, aggravated by whatever, but never as severely as I did then. I still remember that suffocating pain. And that dismissive doctor.
Thanks for your comment Nikki and I am sorry that you had such a horrible experience. Chest pains are scary at the best of times, so I can only imagine how it must have felt to have come across a dismissive doctor when you were going through such pain.
It was freaky at the time. I guess the inflammation was so bad it was causing breathing problems when I was lying down… so I had been concerned it was something to do with my heart. The fact he looked at Nothing worried me a great deal. I had never had that symptom yet so it was disturbing. Now, of course, I worry a lot less about that one.
Thanks for your comment Nikki. I can only imagine how scary this must have been for you!
I totally agree Tracey! I’ve had my fair share of awful comments from Doctors, Pain Specialists and Occupational Health Specialists and completely agree that the medical professions attitude to chronic pain needs to change. Are you in the UK? I’m all for getting involved with wherever you choose to take this! (www.alifelessphysical.com)
Hi Sarah, thanks for your message and yes I am in the UK. I would love some help and am open ideas as to how we move this forward, so will definitely be in touch
My condition is quite different to your own so I wouldn’t say I’ve this experience as such. However I have come across Doctors that treat me differently due to my disability, that don’t listen to my opinion, Doctors that don’t understand my condition and think they know best, even though I’ve been living with it for almost 32 years. I’ve been told I’m overreacting and wasting Doctors time (not in those exact words), even though sometimes I do know what I need.
I wish I had some suggestions, but good luck on your mission!
Thanks for your comment Gemma. I find it incredible that no matter what chronic condition people are battling, there seems to a behaviour from some doctors that is just not acceptable. Nobody seeking help from a doctor should EVER feel dismissed or that they are wasting the doctors time. Hopefully, we can help raise some awareness with this campaign 🙂