One of the most challenging situations for those of us in chronic pain is when we are working with a medical or therapeutic 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. Practitioners have made a career of helping people in pain, yet when they invalidate clients’ experiences, they inadvertently cause more pain.
Not Feeling Heard
- A treatment or protocol isn’t working, or is causing more pain, but the practitioner insists that we continue or try harder, because they believe in the treatment more than in our feedback.
- The practitioner may have experience working with people in pain, but has never had to live with chronic pain so 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 what I call the side effects of chronic pain which can include loss of brain power, fatigue, spaciness, and sleep deprivation and simply don't take these into account.
- The practitioner does 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.
- They have an intense desire to help and would rather believe that the we are wrong than to admit they are unable to offer us a cure.
As a client, 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 same way the norm does.
This is not to say that there aren’t any medical practitioners who listen to their clients. There are many caring, compassionate, and sensitive practitioners who listen and take note of what their clients report and adjust their treatments and recommendations accordingly. But, unfortunately, there are many who don’t listen. Or they listen, but they discount what they hear.
For practitioners 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.
Your Expertise Versus My Expertise
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 practitioner, should the need arise.
You can also use my Statement for Practitioners on my website 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:
- 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.
- 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.
- When you insist that you know more about my experience of pain than I do, I feel belittled and invalidated.
- 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, and bring it with you to medical appointments. I’ll write more in my next post about keeping a pain diary.
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 practitioners. I wish it were not so. But, I believe, since some seem ill equipped to work with long-term pain, it may be up to us to educate them with our gentle, but insistent truth.
Sarah Anne Shockley is the author of The Pain Companion: Everyday Wisdom For Living With and Moving Beyond Chronic Pain and Living Better While Living With Pain. She is a regular columnist for Pain News Network. Visit her at www.thepaincompanion.com for resources for people in chronic pain and more information on her work.