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When Your Doctor Causes You More Pain

6/27/2018

12 Comments

 
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{This article appears in The Mighty as "4 Things You Can Do If Your Doctor is Causing You More Emotional or Physical Pain"}

One of the most challenging situations for those of us in chronic pain is working with a doctor or another medical practitioner who is unable to see or understand the intensity of our pain. They may also feel that its longevity is either questionable, or somehow due to something we, as patients, are not doing right.

Sometimes we are told to do things that are painful for us, and are not believed when we report that it hurts. Sometimes we are told that we simply can’t be in the pain we’re in. Doctors have made a career of helping people in pain, yet when they invalidate our experiences, they inadvertently cause us even more pain.

How does this happen? How do highly trained, and usually very caring, individuals end up causing more pain for the patients they are trying to cure?


4 Ways It Can Go Wrong

This can manifest in a number of ways:
1. A treatment or protocol isn’t working, or is causing more pain, but the doctor insists that we continue or try harder because they believe in the treatment more than in our feedback.

2. The doctor may have experience working with people in pain, but has never had to live with chronic pain, so he does not understand the difference between short-term pain (that usually responds readily to treatments) and long-term pain (which is a different beast altogether and multi-layered). They do not understand the side effects of chronic pain which can include loss of brain power, fatigue, spaciness, and sleep deprivation, so they simply don’t take these into account.

3. The doctor may not believe that our particular condition causes the level of pain we are in and works with us as if we have a different version of our condition, or a different condition altogether.

4. The doctor has a desire to help, but would rather believe that we are wrong than to admit they are unable to offer us a cure.

As a patient, this is very difficult to deal with. It makes us feel unheard, misunderstood, and belittled. Not to mention the fact that we may feel shamed for not healing as fast as we’re supposed to, or for not responding to treatment in the way everyone hopes we will.


This is not to say that there aren’t doctors out there who listen to their patients. There certainly are caring, compassionate, and sensitive doctors who take note of what their patients report, while adjusting their treatments and recommendations accordingly.  But, unfortunately, there are many who don’t listen, cut patients off when they’re trying to explain what’s going on, or discount what they do hear.

For doctors who fit into any of the above categories, unfortunately, the fact that the treatment they are offering isn’t working doesn’t always indicate to them that they need to find different ways of handling chronic pain. For some of them, it’s easier to blame the patient.


What Can We Do About It?

What can we, as patients, do?

It’s important to learn to speak up for ourselves. However, when we’re in pain, it can be very challenging to take a stand of any kind. We’re usually exhausted and operating on limited brainpower. Often it’s difficult to do anything more than barely stumble through a medical appointment. But I do feel that it is up to those of us who live with chronic pain to educate the medical establishment when we have the opportunity to do so.

I have written some talking points below to help you begin the conversation with your doctor, should the need arise.

You can also use my Statement for Practitioners on my website Resource Page as a basis for having a conversation or print it out and take it with you to appointments.

Here are some talking points you might use:

1. I respect you as an expert in your field. I ask you to respect me as an expert in how I am experiencing pain in my own body.

2. My direct experience is the most valid basis we have to assess how treatments are working or not working, and I ask you to be willing to listen to my feedback and take it into account.

3. When you insist that you know more about my experience of pain than I do, I feel belittled and invalidated.

4. If treatments do not work for me in the same way they do for the majority of your clients, it does not mean I am not trying hard enough. It does not give you a basis for discounting my experience. It means there is something new to learn here.

One thing that can be very helpful is to keep a pain diary, a record of the kind and level of pain you experience from day to day, to bring with you to medical appointments. A written record can go farther in validating your pain experience for you than verbal explanations and a detailed diary can seem more real and believable to your doctor. You can download a template for a pain diary from my Resource Page.

It’s too bad that those of us who are already in pain sometimes have to endure more pain, both physical and emotional, when we’re working with certain doctors. I wish it were not so. But, I believe, since some seem less well equipped to work with long-term pain, it may be up to us to educate them with our gentle, but insistent truth.

Getty Image by becau

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Sarah Anne Shockley
 has lived with nerve pain from Thoracic Outlet Syndrome since 2007. She  is the author of The Pain Companion: Everyday Wisdom for Living with and Moving Beyond Chronic Pain (New World Library June, 2018).

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12 Comments
Leslie Baker
6/27/2018 03:57:26 pm

This sounds good, but as I read this post and one other (I forget which one and what it was about. Sorry, oncentration sucks!) what I feel and think about is anger. This type of thing always seems easier for women. Men are more closed. Even to ourselves. I denied that for years, but now have to admit the obvious.

I have suffered with chronic pain for over 12 years and two back surgeries. Now they decrease my pain meds. There is no such thing as physician care anymore. The Federal government practises and enforces medicine today.

I have lived through loss of friends. (Now I have only one local friend. My own fault, I admit!) I survived surgery whith horrendous pain aferward because the doctor could not be reached and heforgot I was already on pain meds. The next day he was upset with me for complaining! I lived throughCT scans where I screamed in pain because the tech was on a tight schedule and could not wait for me to have my scheduled pain med and my nurse would not support me. I am living with feeling alone most days as my wife cannot cope with my chronic pain so I try to live up to her expectations because I love her!

Why do I waste time reading such blogs as yours? Because they are real and my life is not!

In short, there is little hope in this world besides God. I am hoping on approval for a scooter so I can go places. That is the big thing in my life. With a motor schooter I will be able to walk my dog and wlak with my wife.

Such small goals. All dependant on an insurance company. Yes, life is something. If not for Jesus Christ I would end my life! So, I am trapped! Decreased meds, increased pain, increased isolation, decreased life goals (To walks with wife and dog!) and no way to end the suffering! I used to love the rain. Now it only brings more pain with the humidity. Milwaukee, Wisconsin has lots of reai in spring and fall! How lucky is that?

But with all that when alone, and when I read blogs like yours, I can cry. That releases the tension and easies the pain in body and soul.

So, THANK YOU! One more day I survive. I do not expect this to be published. Too much of a rant to make much sense. But the vent help, so thanks for that also! You really are ok!

(No time to proof this. Going out to eat with family. I do not want to, but it is one way to stay in touch. More pain on the way. Just took double dose of pain meds. Hope it mis enough. Hope not too many typos!)

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Sarah link
6/27/2018 11:46:49 pm

Leslie, I really appreciate your "rant"! Living with pain is so incredibly challenging, and I'm glad you have a connection with God to help you through. I hope you get your scooter soon so you can get out more easily. It's so important to stay engaged with others, with life, with yourself even in the midst of pain. I'm glad the post was helpful to you. Expressing how we feel can be part of our healing. Feel free to comment any time! Sarah

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Sarah
7/2/2018 01:21:47 am

Great post with some really helpful advice. I think it’s important to remember that doctors are just people too. Sure some are “experts” in their fields, but they are only human and can make mistakes. And even though they are in a position of authority, we (not only as patients, but as people too!) have every right to challenge them and ask questions and sometimes disagree. What’s most important is to listen to yourself, understand what you’re feeling, and be your own advocate.

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Sarah link
7/2/2018 09:52:42 am

So true, Sarah. Our culture makes doctors into almost demi-gods who not only are considered the only authority in our healing, but are also blamed if they can't make it all right. I think that must be a tremendous pressure. I do believe we need to listen to our own feels, our own inner guidance, and also understand that, ultimately, with or without the help of medications and treatments, we are the ones who heal ourselves. Thanks for your comment! Sarah

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Jaime A. Heidel link
7/5/2018 01:15:10 pm

Thank you so much for this helpful article! It's so important for chronic pain patients to be able to advocate for themselves. I'm sure these tips will help many people. :)

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Sarah link
7/5/2018 01:29:34 pm

Thank you, Jaime, I do hope it will be helpful to many! Thanks for commenting. Sarah.

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Pippit link
7/6/2018 12:18:07 pm

Doctors may think they're helping, but in many cases are lying to themselves just so they don't have to do anything that requires work or effort.

For a doctor to blame the patient when they don't get better is a cop out, and when they overbook and cram patients into their caseload like sardines in a can it is they who are setting things up to fail, not the patient. Doctors have an unfair advantage and we should not have to suffer for their poor judgment and misguided attempts to make a lucrative living. This "triage mentality" that has become commonplace in modern medicine is quite literally hurting, sometimes killing patients.

I have a patient advocacy background, yet several years ago was targeted by the biggest healthcare system in Georgia, expelled and then blacklisted because they valued profit over quality of care. Me and my cluster of rare and hard to treat illnesses simply were not cost effective in their estimation, so they decided my life wasn't worth saving.

It all began with a doctor not listening and not taking me seriously, then another, and another, and a cumulative snowball effect that left me medically neglected, possibly for the rest of my life. This is ultimately what happens when corporations control how healthcare is delivered and doctors' loyalties are divided. Medical decison-making is in large part guided by what's best for the corporation rather than what's in the best interest of the patient.

To this day I am still having difficulty getting all the care I need for all my conditions. I have several types of pain that are unpredictable and hard to manage on an ongoing basis and am pretty much bedbound.

I hope you will sign this petition to improve the medical system for patients. A patient's bill of rights is long overdue and patients need to have a seat at the table when it comes to shaping the medical care system.

https://www.change.org/p/stop-power-hungry-doctors-from-bullying-gaslighting-and-blacklisting-their-patients?recruiter=371789340&utm_source=share_petition&utm_medium=copylink

Mine is the story used as the example in the petition.

I have now dedicated the rest of my life to getting new legislation in place that will better protect patients and afford us more enforcable rights.

Please sign, add your stories in the comments there where it says "reason for signing", and be as detailed as possible about the nature of mistreatment you've suffered. Please share the link wherever you can. All of it gets forwarded to Secretary of Health and Human Services Sylvia Burwell.

The chronically ill represent a very large and growing segment of the total population and we are a large voting block! Don't be shy about using that leverage when you speak with your representatives in Congress.

Impress upon them that we all get sick with something sooner or later that we can't recover from, and the system they create today is the one they themselves will have to live in tomorrow.

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Sarah link
7/6/2018 12:33:48 pm

So true, Pippin, that we need changes that work better for the chronically ill and that there is so often a gulf between our current medical system and those who most need help. Many well-intentioned practitioners are also caught up in a system that doesn't always serve their patients' needs. I appreciate everything you are doing to narrow that gulf, and that you took the time to comment and suggest the petition. I will definitely read it over carefully and sign if it feels right to me. Thank you so much for your comment. xo Sarah

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Lisa Ehrman link
7/7/2018 08:58:40 am

I've dealt with these doctors for years, and it's so frustrating! You get your hopes up, and then they don't help at all.

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Sarah link
7/7/2018 09:34:26 am

So sorry to hear, Lisa. Unfortunately, it's too common. I hope that as we speak up and tell our stories we can create some change, ultimately. It looks like a long road ahead, though. Thanks for your comment. Sarah

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BitterSweet Coaching link
7/8/2018 10:26:19 am

THANK YOU so much for including actual possible responses! Doctors often do not know how someone feels, and it can be incredibly frustrating. I will right down your suggestions in case they are needed, and I encourage others to do so as well!

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Sarah link
7/8/2018 12:37:00 pm

I'm glad the post was helpful! If you're anything like me, your brain is taken over by pain too - I can't think of what to say in the moment, so having something prepared to bring with you can be really helpful. This is also why I encourage people to keep pain diaries - even for one week - doctors tend to believe things that are detailed and written down. Thanks for commenting! xo Sarah

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