By Ann Marie Gaudon
You know me by now; I’ve been in need of you for over 30 years. You know me by name and file number but honestly, I feel you don’t truly know me. By the time we met, I had already seen several specialists but to no avail. What they tell me is that my condition is not curable and as we have exhausted the treatments they have to offer, all I am left with is pain control. This is not how I saw my life playing out but hey, who does? I have something to tell you. I have learned so much over these decades and some of this I would like to share with you. I’ve come to find ways that are valuable, for myself and of course other chronic pain patients. Please hear my message to you.
When you told me “You’re just going to have to live with this,” it was not only unhelpful, but it was also terrifying. That one short sentence felt like a dismissal. What I heard was “I can’t do anything to help you so go away and deal with it.” I can’t even find the words to describe how hard it is to live like this and what I really need is for you to think outside of the box. Over the years out of sheer determination (and desperation) I have acquired many tools to help myself. I need you to tell me there are “actually many tools”, and you will help me collect them or point the way toward them. Help me create a plan including referrals to others both allopathic and alternative. I need hope in order to survive just like everyone else does.
When you told me “You’re not a typical patient,” that label has followed me until this day. Every doctor I’ve seen since you wrote this in my file has virtually written me off before even meeting me. I am seen as difficult, someone to be excluded, and someone that is not wanted as a patient. Labels are for jars, not for people. Chronic pain patients however, get labelled all the time and it’s stigmatizing and offensive. “Malingerers, drug-seekers, lazy, histrionic” – we get labelled with all types of negativity. You truly don’t know the harm you are doing when you label me so please; don’t judge me as a person and don’t judge my pain.
As much as you do not want to be interrupted when you are speaking, I do not want that either. Please let me speak. I have no desire to be defined as a number on a pain scale. Pain has not only invaded my biology but it has also invaded me emotionally as well as my relationships – both with others and with myself. It has affected how I see myself and the world around me. Surely you can make time for me? I struggle constantly with feeling like a burden and like my life has no value. As an antidote to this, what I need is to feel that I matter; that my life matters. I am the one trying to live a life within the confines of this body and I need you to respect that and to ask me questions about my challenges and my hopes and dreams. You can help me by being a better listener and being curious about my whole experience.
I really need you to directly acknowledge that my pain is real. You never took the time to explain to me how pain works in the body and mind and so I have been trying to put together the pieces with Dr. Google. I’ve been trying to give myself validation and that shouldn’t have to happen – ever. Most especially with being a woman, there have been times when it has been suggested that my pain is a consequence of my psychology. Do you have any idea of how insulting this is? You know as well as I do that women’s medicine has always taken quite a back seat to men’s and that women are mistreated and not believed far more than the male population. I needed you to explain how chronic pain can develop in the first place which in turn will give me that validation that I need. Please, just take the time to explore the pain system and to let me know that my pain is as real as anyone else’s. Help me to empower myself, not to feel as if the pain is somehow my fault or imaginary.
Finally, I need you to stick by me with compassion when I’m falling apart. I won’t always be pleasant depending on the severity of my symptoms and how my life is affected. Sometimes I will cry, at other times I will be so angry at the injustice of it all. My emotions will run the gamut: frightened, overwhelmed, lonely, or anxious to name a few. Chronic pain is partly an emotional experience and so my mood will be affected; it’s a given. Please don’t reach for your prescription pad to push antidepressants because I am having normal reactions when things get very tough for me. What I really need is support and kindness when I have fallen down. What you say and what you do can affect me along my journey. The journey can be formidable. Let your words and deeds be guided by compassion to let me know that I will get through this; I need your kindness at these times.
Thank you for reading this. I hope you find some nuggets of wisdom in here that you can utilize for all of your pain patients. We are a complex group to be sure. There is no such thing as “one-size-fits-all” for any population of patients let alone the diversity of injury and illness we bring to your office. We need your help now more than ever so please stay with us and empower us as we try our best to live within the confines of broken and sick bodies.