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Tell anyone that you are a 'victim' of chronic pain and they will look at you with a question “What's that then?”.
You try and explain the excruciating pain that walks hand in hand with this condition and you get the inevitable funny look. Most think it's a bit like having any pain – only a little bit worse.
Sufferers of chronic pain face these inquisitions and attitudes time and time again. It doesn't help the situation and only exacerbates the frustration that compounds this illness.
For those of you that don't know what chronic pain is here's the official description: Chronic pain is pain or discomfort that troubles a person all of the time or on and off for more than three months. It can be caused by a condition (e.g. arthritis, fibromyalgia), an isolated event (e.g. injury, infection), or a non-traceable occurrence.
While acute pain is short term and usually resolves with healing of the underlying injury, chronic pain is often described as persistent pain that disrupts sleep and normal living, and serves no protective function and degrades health and functional capability.
About ten years ago I was suddenly getting very sick on and off. After seeing a specialist for about two years it was decided an operation was needed, one which was aimed at relieving the illness and hopefully getting me back to the everyday of normal living. It was quiet a big decision to make but with the support of my husband it was decided it was the best thing to do especially as we had two very small children at the time.
The operation took place and for about six months after things were good and following the initial recovery period life as it should be got back on track.
However after awhile I began to get excruciating pain down my left side especially. Naturally you go to your local GP and they try everything to help. But this pain was different to anything I have ever experienced and initially was quiet terrifying in its severity.
It was a constant thing but at times it would hit to an extent it was like a red hot knife being thrust in and out of my side . It quiet literally took by breath away. I didn't know what was wrong, my husband didn't know what was wrong and our children were looking at their mother with worry in their eyes. Tests were done but nothing was showing up.
My GP Dr Kieran Greene was great. He kept plugging away trying to find me answers. I was on a lot of pain medication but to be honest the situation wasn't getting any better and I was beginning to despair. At times you imagine that you are going off your head, how could someone have pain for so long with no relief and no answers as to a cure? It was frustrating to say the least. People kept asking me what was wrong but I had no answers to give.
However, driving home one evening I was listening to the radio when I heard Dr Paul Murray, pain specialist at St Vincent's Hospital talking about chronic pain. He described my situation to a T. The next morning I went straight to the doctors to get a letter of referral to see this man.
Paul (Dr Murphy) met with me and talked about my situation. The premise of its development is that after my operation the nerves along my side didn't go back to how they should be. Instead they were 'misfiring' thus causing the pain. I had several options of pain relief to choose from.
That was a number of years ago and I have tried and tested many of his suggestions, going through procedures and tests to try and lessen the pain but there is NO cure for chronic pain.
I spent periods of weeks in hospital or being taken in as a day case in a bid to provide some relief. The medication itself was also taking it's toll, it helped with the pain but, and to this day, leaves you tired and listless.
There were still weeks of bad bouts. I couldn't get out of bed, I needed help getting up from the chair, my body would shake with pain... at one stage I even used a crutch as when the pain peaked it would shoot down my legs causing me to fall.
But chronic pain is not just a physical condition. It takes a huge emotional toll on the person and their family. My children Sean and Katie were wondering when they would ever see me well – a very bad repercussion of this illness.
It was decided I would have a spinal cord nerve stimulator inserted. This is basically something like a Tens machine which wraps around part of the spinal cord which directly affects the pain area. It send impulses, like an internal massage to the relevant nerves affected.
It is not the be all and end all for the illness. It certainly helps and has given me back a huge chunk of my life. But there are still bad days, and anyone who suffers from chronic pain will tell you that bad days should be called 'horrific days'.
Chronic pain is something you have to learn to live with, it is part of my future. I'm fortune that I have a wonderful husband, children and family with great work colleagues who have supported me through thick and thin. It hasn't been easy for them either as they have to pick up the slack when I'm not well. And you have to remember this is not just going on for the last couple of months but for eight years now. I still feel guilty when I get a bad bout. It's something I have discussed with other sufferers and they say the same thing. I still come across people who don't understand when you tell them. They can't comprehend why it just simply can't be treated with a tablet and leave it at that.
That's why a new campaign has been launched entitled 10 things NOT to say to someone with chronic pain.
Written by editor of the Leitrim Observer and Chronic Pain sufferer Claire McGovern
Research by the ‘mypainfeelslike…’ campaign has found that 89% of people living with chronic pain have avoided discussing it with family and friends so as not to bore them or seem annoying. 26% admitted to regularly avoiding talking about their pain with loved ones. The ‘mypainfeelslike...’ campaign has compiled a list of 10 things NOT to say to someone with chronic pain so they feel empowered to talk about it and are encouraged to seek help and talk to their doctor.
A lack of belief around the severity of their pain and a lack of understanding of its impact are daily issues faced by people living with chronic pain.
According to a European survey, around 30% of people living with chronic pain feel that no one believes how much pain they are experiencing. About one in four felt that colleagues, employers and doctors were unsympathetic to their pain or did not think it was a problem.
To support your friend or loved one share the ‘10 things NOT to say to someone with chronic pain’ .
1. But you look so well
2. Do you still have pain?
3. You depend too much on your medication
4. It’s all in your head
5. Have you seen a psychiatrist?
6. It’s just a matter of time
7. You should learn to live with it
8. You should try and get out more
9. You should feel better by now
10. Everyone has pain
“Living with persistent pain can severely impact someone’s life. It is an invisible illness that compromises both quality of life and emotional health”, said Orla Spencer, Clinical Psychologist, Tallaght Hospital, Dublin.
“Many people can feel isolated with their pain and think that others do not understand the impact it has on their life. They often struggle to explain the effect is having on their lives. While intentions are good, comments like the ones listed can be hurtful and inappropriate. More-over, they can often silence someone at a time when they need support from the people around them to be empowered to find new ways to cope with their pain. I encourage people to adopt a non-judgemental approach to someone with pain and to share the 10 things NOT to say to someone with chronic pain video.”
So if we meet on the street or you happen to bump into someone on the street who say they suffer from Chronic Pain, please, please do not say any of the above ten statements.
Life is hard enough for sufferers with out being made to feel even more guilty about it. We could do with a break from those questioning looks and instead look to people to try and understand this illness and give it the respect it deserves.
Just remember that we didn't ask for this... and we have to live with it until the end of our days.
Dr Paul Murphy
Chronic pain is one of the most complex, confusing and frustrating conditions a person can suffer from.
“Good pain is a warning sign for a problem that you need to escape from, but with chronic pain there is often no escape route and it affects people physically and psychologically,” says Dr Paul Murphy, a specialist at the pain clinic in St Vincent’s University Hospital, Dublin.
“We use three months as a starting point to define chronic pain because changes to the neurobiology – in the peripheral nerves, the spinal cord and the sensory cortex – begin to occur at this point.
“Even if the issue with the joint itself has been resolved, the disease process has moved more centrally to become a problem of the central nervous system.”
“The focus has to be placed on managing life with pain, not being too fearful to do anything. For many people, the pain controls their lives, their relationships, their sleep, their ability to work, and they spend their time waiting for the next medication, the next injection or the next surgical treatment. But they have to learn to engage with normal life as much as possible with their pain,” says Murphy.