Helpful versus unhelpful thoughts

What is your experience?

Chronic pain patient writes a letter to her GP

Dear Doctor,

Please find below some suggested principles upon which our relationship could be based:

Communication/goals: The giving and sharing of information. Let’s work as a team. Together, we can go on a journey which includes communicating, listening and doing all within our power to achieve a common goal. While this goal might be different for each patient you have, surely an over aching goal for all patients is to have an optimum level of health. Let us both be clear. I know you may not be able to take my pain away but I want us both to work towards optimising health.

Solutions-focused: I want a sustainable, long term solution. There are many options available to manage chronic pain and I want us to work through these together. When an option is not working, for example the long term use of pain medications, we need to find an alternative, which may include a non-pharmaceutical approach.  I would like all options to be considerate of the end goal (optimising wellness) and therefore we need to consider lifestyle factors, side effects and not focus solely on masking symptoms.

Shared empathy: A good relationship is built on each member of the party having a good understanding of what the other member is going through. We can both actively attempt to put ourselves in the others shoes. For you, this might mean finding the underlying problem behind the symptoms presented. I understand you may never have personally experienced chronic pain. Please, go ahead and use a little imagination or rely on the many other patient experiences you have been presented with. I want to be heard and understood. And often it is the real and debilitating impact of my symptoms that I would like you to understand. For example, constant tiredness may be a symptom but imagine the impact of that on your lifestyle...disconnection from social engagements and family commitments, isolation, guilt and a lack of purpose or sense of helplessness. For me as the patient, empathy might mean walking into our consultation with a realistic perspective of your background and experience. I realise that you are taught to know a little about a lot of conditions and you cannot be expected to know everything. I also appreciate you are time strapped and under pressure to see patients for a very limited time.

Team work: This is where I believe a really good team operates most effectively. All parties feel empowered and work together without a feeling of being told what to do or following along without the option for input and involvement. I would hope that you can give me adequate information about options for self management.  I realise that you may be able to assist with some of the physical pain but much of the responsibility to manage the additional suffering (emotional, stress and lifestyle factors) comes from responsible choices I need to make.  I want you to support and encourage me to make those choices.

Finally, this is NOT what I would like our relationship to be:

• Half an ear listening to my story, a quick scribble on your prescription pad and a gentle shove out the door without a second thought.
• A sense that my story is not being believed or understood.
• Me submitting all my power to you to take my pain away and/or find me a miracle cure (because I know this is unrealistic and unfair to our relationship).

So that said, let’s get moving....

 I would love to know your thoughts and experiences...Just so you know, I wrote this blogpost based on a recent request by Chronic Pain Australia for feedback for doctors from consumers living with chronic pain. Many of the responses were negative towards GPs and their lack of understanding.  I was inspired to write this based on my positive relationship with my own GP. He helped me to become my own health champion and self manage my chronic pain. Without his insight and understanding (and without his life-changing referral to a self pain management clinic), I would never have reached the levels of health and wellbeing I have today. So I would like to say a big "Thank You" to him. You know who you are!

Communicating with loved ones

I hear and see a lot of pain posts about invisible pain and illness. Often people will say how others don’t understand what they are going through. I was the same. I would paint a happy picture to all those around me. When friends and family asked me how I was doing,  I would say “Yep. I’m fine!” I didn’t want people’s sympathy, so I just fobbed it off and changed the subject quickly. But, over time, I’ve learnt this can be damaging to me in two ways. Firstly, it is just plain hard work to pretend when you are in pain. Secondly, my relationships became strained. My loved ones truly wanted to know how I was doing and if they could help but I shut them out because I thought they just wouldn’t understand.  

I think, especially at this time of year, when we are probably spending a lot of time with our friends and family, I thought I would write a few notes on the importance of communicating when you self manage chronic pain. Here are my top tips:

Tell them. Have some real conversations. If a loved one asks you how you are feeling, it is OK to say “Actually, my pain is bothering me today”.  I often found it hard to describe the pain when I was in it because I think a large proportion of my energy was required to manage the pain.  I didn’t have much strength remaining for a deep and meaningful. But that is not to say you can’t talk about it when you are feeling a bit better. Perhaps it might be easier to describe your pain and its impact on your life on paper, in a short film or poem.  But, whatever your mode of communication, I believe it is important to tell your nearest and dearest what it is like for you. They may not be able to empathise as they haven’t felt that way before but they can try if they know what it is like. If you keep saying you are fine then they never get the chance at understanding what you are truly going through.

Ask for help: My loved ones were often offering help to me. They do this because they care and they don’t want to see me suffering. So I have found that once I learnt what works best for me when in pain, I needed to tell them too. I had my loved ones spend the day with me during the pain management course and we went through, together, the activities and techniques that would form my new bag of tricks when managing pain. I also set up a few new rules. As a self pain manager, I said I would ask THEM for help when I needed it.  I also went through my new pain management strategies because when I was struggling I wanted to be sure they were going to offer me real effective solutions. I didn’t want to be mollycoddled . I didn’t want them to suggest I go have a lie down. Now, they tell me to go for a walk or do some stretches because we all know this is what works for me.

Be prepared: I just think it’s good to have a few pre-prepared comments ready for the common situations you may experience. So if the offer of help/query about how you are feeling is made, be sure to be accurate in the answer and give appropriate direction as to how that person can actually help you. My favourite goes along the lines of “My pain is bothering me, would you mind if you (...do this...) so that I can (...do this...)”. For example, here is a common one for me, I am out at a social function and chatting away happily with someone. But sitting and standing for long periods are often recipes for a flare up. So I might say after a few minutes “Do you mind if we sit and keep talking because my pain is bothering me as I have been standing up for a while now?” Or something along those lines. So I always have a few phrases ready and I make sure they are clear, calmly delivered and, above all else, helpful to me in that exact moment.

Get a tribe behind you. I recently attended a pain management support group social event. There was a lot of comparing treatments, specialists, pain conditions. I sat back and listened and tried to ascertain if this was a beneficial exercise. Sure, it is nice to know others are out there in similar situations. For some, this can help to realise that many of the reactions to pain and how it affects your life are universal. You feel less alone.  But, I was concerned because there was very  little suggestions of alternative solutions, techniques within a person’s control to deal with their pain. Since starting this project, I have connected with a number of like minded individuals who believe in the power of self management. This is a great supportive network to be around. When I am feeling low on motivation or struggling with some aspect of my journey, this tribe builds me up and gets me back on purpose. That, to me, is much more helpful than having a pity party. If you focus on the negative, then maybe that is all you will see?

So, it is New Years Day, have you got a resolution in mind? I saw one thing that I thought really true about living with chronic pain. Focus on the things you CAN do. You can have conversations, you can ask for help and you can be a part of a supportive network. What are you going to do?