good doctor

When Your Doctor Doesn’t Listen…What To Do About It!

In Blog by Alyssa Reid1 Comment

The Importance of a Good Doctor

Personally, this is one of the most important relationships in your life!

A good doctor can make sure that you are getting the best help and treatment available. They will also ensure that you have proper investigations to rule out issues – or find issues, to make sure that you are getting the proper help.

Equally, they will listen to you, be empathetic towards your needs and most importantly, you will  feel validated and ‘heard’.  Very important indeed!!!

Does the Following Sound Familiar?

In connecting with thousands of people over the past 8 years (since I was diagnosed with fibromyalgia/CFS/ME), there are a few  complaints that continue to be a huge issue for so many of us…do any of the following resonate with you?

  1. ‘My doctor doesn’t listen to me’
    I will probably be using this pic A LOT in my blogs...!

    I will probably be using this pic A LOT in my blogs…!

  2. ‘My doctor doesn’t believe in FM/CFS/ME’
  3. ‘My doctor won’t prescribe medications that I think might help me’
  4. ‘My doctor just writes everything off as Fibro/CFS/ME now that I am diagnosed…and I am concerned some of the issues I am experiencing aren’t related’

Believe me…I have personally experienced ALL of the above.  And I have changed doctors 5 times in the past 8 years and have finally found an amazing, young, vibrant doctor who wants to do her very best to make sure that I am getting the care I need.

In saying this…the truth of the matter is that there is not much that she is abhttp://www.fibromapp.comle to do now, we have tried everything in regards to pain medications and investigations to rule things out.

However…she is SUPPORTIVE of me in regards to trying alternative treatments, supplements and is a good sounding board.  Bottom line is she not only listens to me – she hears what I am saying. And the thing that has helped bridge the gap in regards to creating a two way communication system is my FibroMapp app reports.

 

Be Pro-Active! Here are a few things you can do…

  1. Firstly, I highly recommend that you download our FibroMapp App. Why?
    Homescreen

    Homescreen

    Because not only does it track your pain, sleep, other symptoms, flare ups, meds, activities and has a journal.  But equally important – it has a REPORTS SECTION.  This means that all the information that you put into the app is collated into easy to read charts and graphs.  Not only does this help you to understand your condition better – and the patterns and triggers; but it also shows the doctor EXACTLY what you are experiencing on a daily basis.  Many people also use their reports as back-up documentation for things like benefits, welfare, insurance etc.

 

  1. Book a double appointment with your doctor.  Let’s face it, they are stressed, busy, dealing with a huge load of work and ultimately only have 5-10 minutes max to deal with you.  As we all know, there are so many aspects to our conditions that generally there is simply is not enough time to go through all the things you need to discuss.  It will not only help you, but also help your doctor, and you won’t feel like you are being pushed out the door

 

fibromapp_reports_website

Easy to read reports in charts and graphs

  3.    Download and print off or email your FibroMapp reports and your journal to your doctor at least a few days before your appointment.  Put a note/letter with it stating that you would appreciate it if they could  please take a few minutes to read through your report so that they have a better understanding of what you                are  going through – BEFORE you arrive for your appointment on x date.

  1. What You Would Like To Discuss…Also state in the above letter/email  that you would like to discuss the following things, ie. Medications, treatments, tests for xyz issues. This way you are preparing your doctor for what you would like to discuss – and it gives them an opportunity to potentially look further into your requests and be ready to discuss it with you at the time of your appointment.  (This also potentially means that you will avoid having to go back to discuss these things another time after your doctor discusses things with you that is new to them at the time of your appointment).

 

  1. When You Are at Your Appointment….At your appointment STRESS how the issues/symptoms you are experiencing are affecting your quality of life. Using these key words is generally a trigger for many doctors to take on board that you are really struggling – and need help!

 

  1. Go armed with a list of things that you plan on discussing with your doctor at the appointment if you haven’t sent a letter/report  (or better yet, not only go with your list, but send it to your doctor ahead of time with your report). There is nothing worse than going to your appointment and walking out and realising that you ‘forgot to ask’ about something….particularly when there are so many things going on.

 

7.  Still Not Happy? Judge how your appointment goes. Put your doctor to the test!  See how they respond to               your questions and concerns and whether or not they are listening, expressing interest/concern, decide on a   course of action (whether it is medication, other treatments or referrals).  Also, do they take the time to   actually LOOK and TOUCH to see what is going on with you?

  

 

  1. Write a Letter! If you are not happy with how things have gone in the past in regards to your doctor taking you seriously, then write a letter expressing your upset and concern to your doctor!  Provide print outs about your illness – or what you think you have – and show them that these conditions DO EXIST and they are REAL and accepted by not only the medical community, but the government as a disability as well (at least in the UK fibromyalgia, CFS/ME are!).  Send the letter not only to your doctor but the head of the practice, so that they will read it as well.  Mention that if they are unable to assist any further, to please inform you, and perhaps they can recommend someone in the practice who is more knowledgeable in regards to fibromyalgia, CFS/ME and Lyme Disease.

 

  1. Request/nicely demand for proper tests to be carried out in order to rule out other issues such as arthritis, MS, Lupus, Lyme Disease, thyroid as well as vitamin and mineral deficiencies to name a few…
    Ask your doctor to explain your results to you!

    Ask your doctor to explain your results to you!

    So many doctors pawn off a variety of symptoms as being fibro,CFS/ME – meanwhile there could be other conditions that might be lurking.  Conditions that could be life threatening, or at least need proper and indeed correct treatment – stat! How many times have we heard, ‘It’s only your fibromyalgia/CFS/ME’???

 

And last, but not least….

 

If you are still getting nowhere with the above advice and actions… FIND ANOTHER DOCTOR!   Sometimes it takes trying a few different doctors until you find one that is not only believes in your condition, but is helpful, compassionate, willing to try a variety of different medications and wants you to have the proper tests to rule out any other underlying issues.

However…

It is important to acknowledge a few things in regards to fibromyalgia, ME/CFS and Lyme disease…and that is that unfortunately, within the western medicine system (ie pharmaceutical medications, physiotherapy etc) there is not a lot that can be done.  It is important to know that although some things may provide you with relief, that this is a bandage…not a solution to the root problem.  (Which we will be discussing in another blog regarding alternative options).  And it is for this reason why we believe that it is so important to gain more control, do your own research, track, monitor, record and understand what is and what isn’t working for you…and ultimately be more involved with your own care and self-management.

It seems that in the UK in particular, because our healthcare system is ‘free’ (and bankrupt) that many people have the opinion that ‘if it isn’t available on the NHS then they aren’t interested.  And when they are informed ‘there is nothing more that we can do for you’ they accept this as a life sentence – and give up.

This is the LAST thing you should do!  When the NHS says there isn’t anything else, then that is the BEGINNING of you taking your life and your health back into your own hands and finding alternative options – that actually ARE helping people!!!  Truth!

In North America, people tend to be more pro-active in regards to taking on the role of research, alternative options such as supplements and using holistic and functional medicine practitioners.  I believe the reason for this is due to the cost of insurance, insurance not covering some medications and not having insurance – leaving people to their devices to find help.  (And because of this, many are actually getting a lot further down the line in regards to getting their conditions more under control).

 

Hopefully this advice will help you!

We want to help!

We want to help!

For me, it took changing doctors 5 times until I hit the jackpot with a caring, concerned, educated (obviously – but about fibro/CFS/ME) doctor.  One other suggestion – if you can get a young doctor, do it!  They tend to be much more pro-active and willing to help!

Using the FibroMapp app made the biggest difference for me in regards to the way my GP deals with me.  In providing her with my reports she now takes my pain, sleep issues and other symptoms very seriously.  In fact, now instead of me going in to the health centre, we either do appointments over the phone…or better yet…she comes to my home and visits me in bed if necessary!

And Lastly…

Through the ups and downs, ins and outs, the hopes and disappointments….NEVER GIVE UP HOPE.

Gotta have HOPE!

Gotta have HOPE!


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