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.