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Fibromyalgia

Calling time on dismissive doctors
Fibro Blog, Fibromyalgia

Calling Time on Dismissive Doctors

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)

 

 

 

New Year, New Beginnings
Fibromyalgia, Inspiration

A New Year, New Beginnings & New Challenges.

“Tomorrow, is the first blank page of a 365 page book. Write a good one”. 

So here we are, the final day of 2017. People around the world are preparing to see in the New Year with optimism and hope. Resolutions will have been made and goals set. As the chime of bells ring out, for some, there will be sighs of relief that 2017 is over. 2018 will be greeted with the expectations that this New Year will be so much better than the last.

Invariably, no matter who you are and what your experiences of the old year, we all welcome 1st January as though it is some magic spell. A special power which can transform us and make the negatives in our life feel positive all of a sudden.

As we contemplate the next year, we think about all the wonderful things that we can achieve. We can lose weight, join a gym, write that book, find the love of our life – anything is possible on New Years Eve.

However, the reality is that the 1st day of January holds no magical powers, it will not transform us just by thinking positive thoughts. What it can do is provide us with the opportunity to start again – but then again, the other 364 days are equally as powerful in this respect. Each day is another chance to make those all important changes to our lives.

“The New Year will be like the old one if you keep on doing the same old thing”.

For those of us who battle chronic pain, the first day of a New Year will not provide us with the miracle cure. Our symptoms won’t give us a break just because it is 2018. From one year to the next, nothing changes unless we make it happen.

As we enter 2018, it will mark 29 years since I first experienced my Fibromyalgia symptoms. Since 1989, my life has been a rollercoaster of symptoms and emotions. No amount of New Years Eve resolutions made any difference to my condition. It was a gradual process of trial and error that brought me to the point that I am now.

I learnt over time that every new day was a opportunity to try again.

New Years Eve is definitely a time to draw a line under the things that we no longer want in our lives. We can verbalise our intentions and think about what we would like to accomplish. We can set our goals and decide how to bring them to fruition. But according to the University of Scranton, research suggests that just 8% of people achieve their New Year’s goals. That is ultimately a lot of disappointed and demoralised people who started out with good intentions.

The secret to achieving your goals is to make them small and attainable. Bite size chunks win the day as opposed to great big whoppers that will likely fall by the wayside before January is out.

For those of use battling Fibromyalgia, just getting through a normal day is a big deal let alone, adding in some hefty resolutions that will leave us feeling like crap when we slip up. The truth is we have 365 days to make changes, we have 365 opportunities to start again.

Just some tiny tweaks to how we manage our condition can make a world of difference. Adding in a few minutes of gentle exercise each day will reap huge rewards. Eliminating caffeine a cup at a time is a small step to better health. Embracing a short meditation practice before bed can result in a better nights sleep. All little do-able, attainable goals which have the potential for making a huge difference in managing our symptoms.

So, as I personally prepare to say farewell to what has been a challenging 2017 for me. I look forward to 2018 with much excitement and a few nerves as I officially launch Fibro Fantastic™ Wellness Coaching.

My goal is to stand alongside you on your Fibro journey. To offer you support and empower you to “Thrive, not just Survive.”

For the next 365 days I will be committed to offering you support through this site, my social media and also the opportunity for you to sign up for an online wellness course which will be ready for launch early 2018.

If you make just one resolution this New Year’s Eve, let it be that you will put yourself first. Think outside the box and try something different when it comes to managing your chronic pain. Open your mind and head into 2018 ready to push the boundaries and embrace something new. Doesn’t have to be anything heavy or huge, just the commitment to give it a go.

On that note, I want to wish you and your families the most amazing 2018.

365 days of wonderful possibilities and a year that is peaceful & gentle for you and your body. 

Happy New Year

 

 

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