My doctor dilemma when living with chronic illness

Something that has been coming up for me recently has been why my GP does not give me the support that I need. Here I am exploring my feelings about it as I believe it may be something that helps other people living with chronic illness. 

I have been thinking about this because I  had an appointment with a new medical centre. I asked my GP for a print out of the last few specialist appointments I had attended and was shocked.      

Shocked because my GP had not told me what these specialists had said.

Shocked because my GP had not done the follow ups that multiple specialists had requested. 

I understand that my medical situation is complex but now on top of everything else do I need to change GPs?! This is a bit of a big ask when you live with chronic illness and have a huge file that goes back many years. Claire at 'Through the Fibro Fog' explains how I feel about it:

Switching medical care can be daunting. It takes a lot of mental strength I find, to realise that a situation isn’t for you and to move on. Let’s face it, it’s a big hassle and can feel a bit awkward at times. Finding a better doctor, getting a referral (depending upon your health system) and then organising all the right paperwork too is a lot to deal with. But switching things up can lead to better care. And we all deserve the best care possible. 

Sarah has written an article about her GP not taking her seriously even though she has five separate diagnosed conditions including myalgic encephalomyelitis: 

To this day my GPs still refer to my symptoms as nothing to be concerned about. My conditions as low level diseases, and any query I have about them is quickly dismissed. I have even had GPs disregard what specialists have told me claiming it isn’t as bad as it has been painted. If this wasn’t enough, they ignore my constant irregular blood results and fail to monitor me on my medication – but why? ~ Sarah at Me, Myself and Chronic Illness Blog

What Sarah says got me thinking about how much we have to advocate for ourselves when we live with chronic illness. I am constantly having to ask my doctor to address different symptoms I have and not just dismiss them. If somebody without chronic illness went to their GP with one of these symptoms I feel they would be listened to and taken more seriously than I am. 

How to advocate for yourself when you live with chronic illness – boy, this is something I wish I had known how to do at the beginning of my health journey! When I first became unwell it happened without warning. One day I was pretty fine, the next I was thrust into my healthcare system trying to work out what was wrong. To begin with I was naive. I went along with whatever the doctor told me, but that didn’t always go well . . . From Claire at Through the Fibro Fog 

My recent situation with my doctor was a big let down and it made me feel quite naive in that I actually believed my GP was there to support me. It also made me sad and angry. I can no longer trust him in the way that I did. He is not helping me with my ongoing issues. 

I have given it some thought and think, that I was suffering under the illusion that my doctor was my health advocate and person who had an overview on my situation.

In defence of my doctor my health issues are complex. I have multiple diagnoses and see multiple doctors in different fields. The problem is that this is also the exact reason I need a good doctor's support. 

I feel the key to having the ideal set up for treating chronic pain (besides having open-minded, kind doctors who have chronic pain education) is that all the doctors in your life have communication. Having a team of doctors (much like I used to be a part of a team of students/teachers) can bring the missing piece of collaboration to address the whole of the person. ~ Katie at PainFULLY Living

I agree with Katie and this is what should happen in an ideal world, but unfortunately in my case it is not. The specialists think this is happening. They write recommendations to my GP and probably believe that he is following up on these things.  There is a massive communication breakdown. 

When I ask my GP about what the specialist has said he does comment but has in the past never given me the letters, treating them like priveleged information for his eyes only. After all the letters are written to him and in medical language, not layman's language. They are not addressed to me BUT they are about me AND about things that my GP is meant to keep an eye on. 

I have now realised that I can ask for a copy of these specialist's letters and will make it my norm when attending my GP. 

As far as what I expect from my GP, or any medical professional, I am on the same page as Caz, from Invisibly Me, who says this about doctors:

"They are there to do a job; they are being paid to see to your health and wellbeing; " and "You deserve to be treated with respect, to be taken seriously and to be listened to."

 But more than this I expect more from my GP than quick episodic care for acute illnesses. I expect that my blood pressure will be taken and that anything mentioned by a specialist, that I have attended, will be followed up and discussed with me. I need to ask my GP why this has not been happening. Even if I do not have this difficult conversation I will be asking for each and every copy of a letter after I attend a specialist and also asking for my blood pressure to be taken on a regular basis. 

When I started this post I had decided I was going to maintain but improve my relationship with my GP and be even more of an advocate for my own health. I have now decided that I will be changing GP's. The more I consider it, the more I realise just how lazy my GP is. He has not even followed up on requested blood tests from my specialists. He is not helping me, he is hindering me. 

I'm sure I will be updating you on my experiences on changing to a new GP. Do you have any advice on how to go about this?  I would love to hear your suggestions. 

SOME HELPFUL RESOURCES:

• Becoming Your Own Health Advocate. Cynthia has 5 tips 
• How to advocate for yourself when you live with chronic illness. Claire has 10 tips. 
• When you hit a wall with medical professionals. Suggestions from Caz. 

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