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)