As a pain therapist who has spent her whole working life dealing with people in pain and studying pain science and all known methods to bring relief of pain, I have just had the most challenging and difficult experience. It was not only difficult as a pain therapist, but also as a mother. I want to share it with you, because it may just help you in your life.
My 23 year old son has been travelling the world for the past nine months and having the most extra ordinary time discovering and delighting in this big and magnificent world we all live in.
He found himself in the “A & E department” of Hereford County Hospital in the UK, last Friday night with a terribly painful abdomen and a mild skin rash on his legs. He had already seen a GP who had listened to his story and miss heard enough to make an incorrect diagnosis. He failed to hear the severity of the pain, he failed to see the distress levels my son was experiencing, and he missed the link of the skin rash. He sent him home with antacids. The pain escalated. The emergency doctor, overworked and overstretched, made the same mistake and sent him home, after a 5 hour wait, at least with a script for pain medication, but again with an incorrect diagnosis of “gastritis”.
My son’s distress at being fobbed off was huge and he left the hospital feeling despair and extreme fear. On the way home he started to vomit copious amounts of blood and they rushed him back to the hospital. Another 5 hour wait followed, before a brilliant nurse alerted the doctor to the state, he was in. By that stage, his legs were triple their normal size and were purple due to the skin rash that had grown and become extremely severe. He could not move even a toe, the pain in his legs was so terrible and his abdominal pain was making him incoherent it was so intense. The doctor, when he eventually came to see him, balked at the sight of him, administered some strong pain medication and admitted him immediately. He called in the opinions of many teams of specialists to help him diagnose what was going on. I booked a flight and left within a few hours of hearing about the situation. For the first time in many hours the pain reduced, and the stress levels came down a tiny notch.
There are many reasons to share this awful story and there is much to unpack, which over time, I will try to do for all who are interested. For now, here is a summary of what I think is most important to learn and remember....
Listening is the biggest gift you can ever give another human being. Listen with your mind empty and without any preconceived judgements. As a medical practicioner, we are taught to observe the patient from the beginning of the interaction and it is tempting therefore to observe and listen at the same time. I think this is a real place for poor listening to set in. Listening needs to come from a place of curiosity and complete non-judgement. We need to hear what is being said and not what we think should be said. We need to listen with empathy. As Brené Brown says: “empathy has no script. There is no right way or wrong way to do it. It’s simply listening, holding space, withholding judgement, emotionally connecting, and communicating that incredibly healing message of ‘you’re not alone.’
Pain is protective. The brain produces pain as a means of protecting us and keeping us alive in the world. Fear, feeling that no-one is listening or helping, aloneness, isolation all increase the need for protection and therefore pain.
Inflammation is protective. It is orchestrated by the brain to protect the body or tissues from damage or a microbial infection. Sometimes the brain orchestrates a massive inflammatory response which is not needed or is beyond what is needed. The question needs always to be asked, what was the brain looking to achieve and why did it think this protection was necessary?
Pain and fear are stressors and the neuroimmune response to stress is to increase inflammation.
My son was finally diagnosed with “the worst dose of HSP” (Henoch-Schonlein purpura) and vasculitis the attending teams of doctors (as well as doctors from all around the world who came on board to try to help diagnose and treat this situation) had ever seen. This may have been in response to an infection of sorts. Why did he get such a severe dose? We will never know, but it can't be missed that not being heard right at the start was a factor. Having to sit and wait without any pain relief or anyone taking responsibility for helping him was another factor. He needed 8 days of in-hospital treatment and hectic doses of cortisone and morphine-based-pain-medication to try to get him out of danger and back to being able to function (eat, sleep, go to the toilet and walk with a walking frame).
I watched helplessly as this situation unfolded, understanding as I do that the best thing that I could do was reduce the threat value of the situation for him. I did this with his wonderful, supportive girlfriend.
Of course, the threat reduced as soon as someone acknowledged he didn’t just have a tummy ache. The threat reduced when someone said, “we will help to figure out what is wrong and find ways to get you better”. It reduced when he realized that a network of brilliant doctors all around the world were all contributing generously to helping solve the mystery of what was happening in his body. The fear also reduced when I said over and over again to him: “you are a healing machine”, “your body knows how to get you well, we just have to help it” “remember all the times the grazes on your knees healed”, “your body is infinitely intelligent” “we are all here to help you, you aren’t alone with this.”
His body is healing well now, and he continues to get strong again. The pain is significantly reduced, and he will fly back to SA when he is well enough to get on a plane. Being home will reduce the threat another notch, although he is with family in the UK who are helping and supporting him every step of the way.
Maybe you can use some of this to help you manage your own pain, your ongoing inflammation, your ill health that feels out of control? Maybe you can help a loved one, by listening better and believing whatever they say is their experience. Maybe you can keep insisting that someone listening to you, really hears what you are saying, because it's that important. Keep trying to say what you need to say, until you know the listener has got it and truly heard what you are explaining. Don’t settle for poor listening, you deserve better! We are never really alone and isolated. We are all integral parts of the carpet of humanity.
I wish all of you beautiful people who are part of the Body Brilliance and The Energy Incubator family, health and wellbeing, and pain free living, as well as magnificent communication.
Much love,
Sue