In order to make sense of the many confusing and distressing impacts that pain brings, it is essential for healthcare professionals to engage in a cycle of listening, reflecting, changing and acting. With this in mind, I recently had the great pleasure of interviewing a lady who, having experienced a horrific ordeal that very few of us can even dare to imagine, expressed a desire to share her experience of living with pain.
I would like to take this opportunity to thank her for her time. I’m sure that her story will greatly help other people who live with pain, whilst also guiding those of us who try to help others make sense of it all.
This lady has also very kindly offered her time to provide group talks and answer any further questions. Anyone who wishes to get in touch with her should contact me at firstname.lastname@example.org
My experience of physical pain goes back a long way and has taken up the better part of my life. I would sum it up this way I think:
Pain causes suffering. Suffering opens us to learning and experience.
Learning and experience give us progress and depth.
Progress and depth add richness to life.
Pain adds richness to life, (among other more negative things and I am not suggesting that pain can
be eliminated neither should it be. ) And here is how I reached this very small conclusion.
My own personal journey with pain.
I was a young 26-year-old woman in 1986 coming back from my Indian holiday when I was caught up in a hijacking that changed my life, psychologically but even more so, physically.
After 17 hours where I had been kept hostage along with 400 passengers, the lights and air conditioning in the plane failed. We were on the Karachi Airport runway in an American 747 belonging to Pan Am and the terrorists who had come on board had been negotiating with the manager of the airport in Pakistan for a new flight crew to come because our previous one had escaped before the hijackers had taken complete control of the situation
Frightened by the changed circumstances, the terrorists opened fire after the usual cry of “God is great!” They used machine guns, and hand grenades, and pistols to do their business and succeeded in killing 22 people and injuring more than 150.
I was caught by a grenade which fell upon my kneeling figure which was jammed in between the seats at the back of the cabin on the lower deck. I felt the impact of the explosion throughout my body and literally thought my soul was pouring out of me. It was, in that I was losing blood from the gaping wound left as the shrapnel ripped into my left buttock. I felt a jolt that ricocheted from my pelvis to my head, my shoulders, my legs, my feet, my eyes, my tongue, my ears, my heart, my ribs, my lungs, my everything. The grenade blast was all-consuming.
I knew then that my life was over….the life I had known until then. I never lost consciousness until finally taken into theatre for life saving treatment. I was looked after initially by Ginnah Public Hospital, and then by the Aga Khan Private Hospital. I received wonderfully professional treatment in Pakistan, both surgically and humanitarianly.
After one week where my condition although very precarious, was considered stable enough for transportation back to London, I was accompanied by a doctor and nurse from Pakistan, and flown to the Middlesex Hospital where I stayed for 5 months.
The injuries I suffered were multiple, and even now I find it almost incredible that I survived them. The individual problems cited prove to some degree that I have sufficient experience to talk about pain and that perhaps I might even be considered a bit of an expert.
Initially, the grenade caused me to have
– A fractured pelvis in 5 places.
– A fractured head and neck of femur.
– A torn sciatic nerve that has never recovered and consequently a dropped foot and no sensation in half of my leg and bad circulation.
– All gluteal muscles of the left buttock were compromised by shrapnel and jeans in a mangled mess.
– Severe bruising of the intestine and shrapnel in the lower back and internally which made necessary a colostomy procedure.
– Exploratory laparotomy was essential to discover the bruising and/or internal bleeding.
– Split skin grafting which took several weeks in order to cover the wound the size of my missing left buttock. Skin was taken from the thigh of the right leg to cover the left buttock.
– Multiple orthopaedic surgeries for femur, head of femur and a removal of both after 18 months because of bone necrosis.
– Embolism in the left lung due to too much bed rest.
The list relative to the injuries sustained in the hijacking and consequent complications goes on, but the procedures were carried out in an effort to improve the catastrophic medical situation I had.
Then 4 years ago I had cancer, with painful chemotherapy treatment and have since recovered.
2 weeks ago I have had a severe bout of pain cause by compression of the nerve in my spine.
I have indeed had more than my fair share of pain.
But I have also had more than my fair share of resources to deal with it.
What have I learnt from my experience of pain?
If I am satisfied with who I am then pain is less acute and occupies a less important place in my life.
I have learned the art of resilience, patience, the benefits of distracting myself, and empathy.
I have learnt that physical exercise is fundamental to diminishing pain intensity.
I am similarly learning moderation and that I must not overdo exercise!
I have also learnt to go with pain, accepting it.
I have learnt that by being good at many things I create self esteem which creates joy and this ameliorates pain.
I have learnt to understand different kinds of pain and what I must do for each type.
I have also learnt that pain allows you to take a short cut in life experiences. You have to get thing right fast otherwise you waste time and then can’t do what you want to do because of pain.
I have learned to take responsibility. No one can feel your pain. It is non-transferable so you are in the driving seat. YOU must take care of YOU. No one else can take full responsibility for your well -being or your comfort. No health professional or fellow human will have your health and well-being as close to their heart as you do.
I have learned the power of visualization thus transforming sensation or alleviating what I perceive as pain.
I have learned to trust my gut instincts, and feel the things my body is telling me. We can pick up on our subconscious world that has huge understanding of many things, and learn to make those things conscious. I think this growing ability encouraged me to go for a check-up. From this check-up I discovered that I had a problem. This led to the discovery of cancer. Prior to this I had had very specific dreams which were detailed and clear. I knew they were significant. I followed up on them.
I have understood that I have an infinite number of resources aside from those offered by external suppliers that can completely change my experience in and around pain. This knowledge reassures me and removes the victim/loser stance.
What has helped you the most?
– Knowing that my body is designed to stay in good health. It tends to find its equilibrium and will do its best to stay there.
– It generally gets better after illness.
– YOU MUST TAKE CARE OF YOU. It means that you adopt yourself as an important individual whose needs must be catered to and for. This was something I learnt very early on and meant that I was able to defend myself against malpractice in the medical profession and avoid excruciating discomfort.
Do you have any experiences of poor or unnecessarily frightening communication from healthcare professionals?
– I was told I would probably never walk again. On good days I can walk with two crutches covering distance. I was determined to succeed in this.
The reaction to this “sentence” was disbelief. I did not for one moment imagine that not being able to walk again was a possibility and did not “feel” this to be true. In fact it made me even surer that I would walk again.
My understanding of how someone could utter such a prognosis is that the clinician was most likely far removed from me as a person. He saw the extent of these injuries which were multiple and included a loss of muscle structure, bone mass, nerve pathways and a state of anorexia, and judged the likely outcome. He had not taken into account the irrepressible desire I had for life, and that I had, for all those experiences associated with being a young person on the brink of many of life’s adventures.
A second example is the following,
– I was told I would be in bed throughout pregnancy if I ever became pregnant. This created fear in my partner. We had no children because of this. I would have carried a child and used my imagination to get round bed-rest, knowing the strength of mind I have.
On a previous occasion,
– After the hand grenade injury, I was catheterized. Over the 4 months where the catheter was infrequently changed, I became more and more uncomfortable. I had infection and pain, with difficulty urinating because of frequent blockages. Finally I tore the catheter out and defied anyone to stick it back in. There was considerable disagreement with the sister of the ward over this as she wanted control. She even forced me into having a catheter pushed into my urethra once again. It refused to go in, and I was given incontinence wear. Because of infection, and lack of sphincter tone due to lack of use, I tended to wet the bed but I saw the catheter as a terrible imposition on my free will and a lazy but convenient alternative for staff who would have otherwise had to take me to the toilets.
Things came to a head after repeated complaints from me when I described to doctors and nurses alike that I had a rolling sensation in my belly when I went from the supine position to an upright position. I was tested for vaginal infection, and of course had candida. I was told that my broken pelvis was on the mend but causing pain. But I knew that I had something else wrong with the mechanics of my bladder. I described the sensation repeatedly. No one really listened and weeks went by without anyone taking charge of the situation.
One day I went to the hospital phones and called one of my more sympathetic surgeons who I had not seen for a while. I asked him to help me as I was desperate. I remember crying and shouting down the phone to do something.
The following day I was x-rayed. I had a very significant bladder stone which was removed the same day I had the x-ray.
This was one of a number of occasions where I was poorly listened to, if not ignored and which created huge distress and misdiagnosis.
Needless to say the Sister saw me as a trouble maker and came to me to complain, asking me why I had gone “behind her back.” (This was some 25 years ago)
Do you have any experiences of helpful communication with healthcare professionals?
When I was going through chemotherapy because of cancer, 2010, (in Italy) I found that despite my “alternative ideas” about how to help my body deal with what was effectively a poison for the rest of my system, the healthcare staff were generally tolerant, and patient allowing me to boost the positive effect I created because I felt I was helping my body. Whether I was or was not, the placebo effect is a valid medicine and harmless.
My own Italian family doctor also encouraged a spiritual look, at how to cope with the fear inherent in the disease. (i.e. I learned to transfer my fear, by giving it to an external entity). I was wonderfully listened to by my GP. I felt I was valued and applauded because of my own involvement and proactive position.
Recently I decided to turn to a pain specialist in Italy because I was not getting to the bottom of a problem I had had for several years.
Once again I took things into my own hands and received a logical explanation for what was wrong. I was treated and the pain in this part of the body has gone. I was listened to and things were dealt with. The NHS failed to diagnose the problem although I had been to an NHS physiotherapist and seen my own GP.
As a teacher, how would you rate the facilitation skills of healthcare professionals that you have met?
– My local British GP does the best he can and is excellent but is hampered by the time slot he has available.
– I recently experienced a course on pain management. It was significantly watered down although there were some new ideas which encouraged the patient to think about ways of understanding pain differently including ways of dealing with pain. There were some nice metaphors and it gave me a feeling that pain is actually a safe instrument that is useful for the body rather than a curse to be borne.
Ways of negotiating pain need to be further explored however and healthcare professionals must have training in empowering patients and through education encourage we as patients to be our own mothers and fathers.
Indeed this is a future branch of health-care and is at the moment in its infancy. I would call it “Empowerment and Responsibility” It is not enough just to do pain awareness courses. There must be a new discipline that becomes obligatory for all those who are going to work in the healthcare sector..
It would be very interesting to see if there might be incorporated some of the new techniques of self-awareness which could stop the negative thought patterns which can make things so much worse and which remove the person from understanding their own connection to the body which carries them around for life.
It might even be possible to celebrate pain in some way if we could find its deep intrinsic value.
So I go back to my small conclusion: “Pain adds richness to our lives.”
What advice would you give to others who live with pain?
– Take what others say at face value regarding the prognosis if pain is caused by an illness, and be fascinated and “in love” with your own well-being. Know that pain can change as you shift your understanding of it. Be flexible and limit negativity. Never think you know how things will be. Be creative with how you deal with pain. Keep looking for ways, keep reading, keep discovering, and keep curious. And be constantly grateful for the things that work. Exalting the good aspects of your physical life will far out way the negative, and refocus your attention on life enhancing things.
What advice would you give the healthcare professionals?
– Be humble, learn from your patients by listening.
– Whatever you have discovered pass it on to your patients using adequate language, and appropriate knowledge.
Empower the patient. For example ask them to describe the pain and find a solution re control of the intensity of that pain where possible. Get them to see the pain in pictures, asking them to circumscribe it. Don’t dumb down your input, just because you think the person won’t understand. They most probably will. Be compassionate, and positive. Remind them of the things that will work in their favour, and that are generally fine.
Reassure the person regarding what pain can be about and what it can mean and that it is not always a wholly negative experience.