Can You Feel My Pain by Eimear Ní Chearnaigh

Almost ten years ago I was badly burnt in a house fire. I sustained full thickness third degree burns to 26% of my body. As a result of the burns and about 60 operations the muscles, tissue and nerves in my body had become badly damaged. The burns slowly began to heal and I should have been rebuilding my life but instead of feeling better I was experiencing more intense pain. This pain began to radiate throughout parts of my body that had not even been burnt. Doctors could find no physical reason for the pains that felt like stabbing, burning and stinging electric shocks shooting from my neck down my back and into my legs. It took six years before I was diagnosed with Chronic Neuropathic Pain.

Chronic Neuropathic Pain is a hidden condition. The central nervous system stops functioning properly, causing the nerve-endings to constantly send signals of pain to the brain, even after wounds or tissue has healed.

Living with Chronic Neuropathic Pain can be a sad and isolating existence. It has the potential to steal away from you what you feel are rightfully yours. Your body does not belong to you anymore. It won’t function in the way it should or used to, it fatigues quickly and sometimes feels like it will shutdown completely. Your choices don’t belong to you anymore. Everything you do and everywhere you go is dictated by the level of Pain you have at that particular time. Your thoughts don’t belong to you anymore. How you think becomes invaded with negativity, your judgement becomes so clouded by the Pain that you cannot think rationally. This overbearing Pain becomes the main focus of your thoughts. Your feelings and emotions don’t belong to you anymore. Neuropathic Pain has a huge impact on your emotional wellbeing, causing you to feel completely overwhelmed by it. Feelings of depression and anxiety become part of the daily struggle for survival.

As Neuropathic Pain runs it path of destruction, wreaking havoc on your mind and body, your life as you knew it begins to slip away, causing distressing and detrimental effects. The fact that nobody around you appears to understand what’s happening to you makes this a very cruel condition to live with.

There is no cure for chronic pain. Multi disciplinary pain management and advanced, highly specialised medical intervention is the only hope (at the moment) for temporary relief and for any chance of some quality of life. However, Chronic Pain is not formally recognised in Ireland (or Europe) as a disease in its own right. This serious condition continues to be misunderstood, misdiagnosed and inappropriately managed. You can help to change this by supporting the 'Can you feel my Pain' campaign and signing the bill of rights.

Chronic Pain Ireland, in conjunction with Pfizer and a number of other leading patient and citizen organisations across Europe have joined forces to call for real change through the campaign "Can You Feel My Pain?" Later this year, we hope to have collected significant support for the Rights, which will be presented alongside the launch of a European wide report (Pain Proposal) that aims to drive recognition of the personal, social and economic impact of chronic pain on the European population - promoting change to ensure the right patient receives the right management and treatment at the right time.

There are five key rights that we believe will help improve the life of people affected by chronic pain.

1. Right to be Understood

2. Right of Access to Information

3. Right to Professional Support

4. Right to Early Intervention and Optimal Pain Management

5. Right of Pain Relief as a Fundamental Human Right