In 2011, a pan-European campaign called The Pain Within was launched in Hamburg, Germany. The exhibition is currently touring Europe and consists of specially-commissioned photographic patient portraits by award-winning photographer Alex Telfer to raise awareness of peripheral neuropathic pain.
Alex Telfer worked with patients from across Europe to understand how they feel about their pain and challenges that they face with it every day. He then spent time with them in a London studio to capture images that could convey those feelings and experiences to others.
The aim of The Pain Within is to foster greater understanding of the disease and the burden it places on patients. The Pain Within will help the friends and loved ones of those living with pain, as well as the general public, to understand the patient’s perspective and the challenges they face every day. Ultimately, it will help patients living with the condition by creating an environment in which the burden of their disease is recognised and understood.
The Pain Within is supported by Astellas Pharma Europe to raise awareness of neuropathic pain.
“I couldn’t sleep at night, even with sleeping pills. I used to cry a lot because the pain was so severe and I didn’t improve. It was very difficult”.
“I started getting neuropathic pain in my stomach, side and back after a bout of shingles in September 2010.
My pain feels like a constant burning. It is an intense and deep pain that feels as if someone has poured scalding water over me.
I have suffered a lot with the pain. When I was first diagnosed, the pain was so great that I stopped doing everything in my life — such as not being able to eat or dress myself. I couldn’t wash because of the pain of splashing water onto my body. For about a month and a half, I was on crutches and these prevented me from going out in the street. I couldn’t sleep at night, even with sleeping pills. I used to cry a lot because the pain was so severe and it didn’t improve. It was very difficult.
Now the pain is a bit better controlled but it still affects my life. I wish that I could be active again and not be so dependent on others, particularly my sons.”
“If I wear a long-sleeve t-shirt I know it’s going to hurt because the sleeve feels like a heavy weigth, not just a piece of fabric”.
“In 2002, I had an accident in gym class and broke the ulna and radius of my left arm. Doctors told me that the fracture was complicated and I would need surgery.
When I woke up I couldn’t move my fingers properly and the doctors realised they had severed my radial nerve and my fingers would be paralysed. Initially I didn’t feel anything, but four years later the pain started and pretty soon it was almost unbearable. I couldn’t sleep without sleeping pills and even with the pills I could only sleep for four hours a night.
I experience neuropathic pain in lots of different ways. Sometimes it feels like an immense pressure, as if a giant is squeezing my arm, at other times it’s like somebody is stabbing me with a knife over and over again. If I wear a long-sleeved t-shirt I know it’s going to hurt because the sleeve feels like a heavy weight, not just a piece of fabric.
I had months in my life, when I was 19 or 20, when I should have been thinking about what friends to meet or what movie to watch. Instead I was lying on the couch, unable to move because I hadn’t slept properly in months. At times I didn’t know how to go on because the pain hurt so much and I knew nobody knew how to help me.
By now, I fear that I will never be without pain. I wish that someday the pain would be reduced enough so that I could get used to it.”
“For me, the pain feels like I’m being tortured with a high-voltage electrical current being passed through my foot”.
“I have neuropathic pain in my right leg, stretching from the spine down to my toes. I’ve had it since 1998, caused by radiation therapy to treat testicular cancer. For me, the pain feels like I’m being tortured with a high-voltage electrical current being passed through my foot.
I am affected every day. I can only walk short distances, can’t visit the cinema or opera because it is too painful to sit for a long time, can’t drive my motorbike because of my medication, and appointments with friends often have to be cancelled. Almost every night I have pain attacks that wake me up and prevent me from sleeping. Because I am excessively tired every day, I struggle to concentrate and manage everyday tasks. This has had a very negative impact on my self-esteem. In 2008, I was forced to quit my job and accept early retirement. This was a major blow and it caused me to suffer from a temporary heavy depression.
The pain has become the dominating factor in my life, along with a permanent agitation and a need to move around to get pain relief. I long to be able to sleep through at night and achieve inner peace — that would be invaluable.”
Rachel, United Kingdom
“When my nerves were damaged initially, it felt like a small child was sitting on my food for hours, causing intense pins and needles from my knees to toes”.
“My leg was badly injured in a road traffic accident in 2005. To treat my injuries, I had to have an operation. During the operation some nerves were damaged and since then I have had neuropathic pain.
When my nerves were damaged initially, it felt like a small child was sitting on my foot for hours, causing intense pins and needles from my knees to toes. Now, without medication, my leg can alternate between a burning sensation and an incredible itch that makes me scratch until I draw blood.
Since the pain began, my life has changed so much it is difficult to say what is most affected. I avoid anything that touches my leg — I hate wearing socks, I can’t wear boots and I can’t have a sheet touching my leg at night. I use a foot stool when I can to avoid swelling. I try not to let my pain stop me from doing anything but I do get much more tired than other people my age. Because of the pain I can only work part-time. One of the most frustrating things is that the pain is completely unpredictable and I can never tell when it is going to get worse.
Over the years, I’ve tried lots of different treatments and seen loads of doctors and nurses trying to find the right solution. My aim at the moment is to get my pain under control so that I can start a family.”
Ton, The Netherlands
“When I was younger I was technician in the Dutch marines and I flew over the world. Now I am constantly restricted. At its worst, I feel like I’m being stabbed repeatedly.”
“In Autumn 2010 I had shingles. Two weeks later, I started to experience pain on my stomach and back and was diagnosed with neuropathic pain. It begins like
electric shocks, develops into a burning and at its worst, I feel like I’m being stabbed repeatedly.
I used to be really active. When I was younger I was a technician in the Dutch Marines and I flew all over the world. Now I am constantly restricted. When the pain is bad, it is impossible to do anything — plans have to be cancelled all the time.
I am always looking for relief. During the day I force myself to go for long walks to try to help the pain. At night, the constant pain and itching keeps me awake. I never sleep for more than two hours at a time.
I don’t want to burden my friends and family with my problem so I keep my thoughts and feelings about my pain to myself. I just hope to be able to get some relief.”