“It is difficult to convey how chronic pain totally invades and affects all aspects of your life.
It is a constant inescapable entity. And it is difficult to make others understand. Everyone has endured pain, but not the kind of pain that you must live with 24 hours a day, 7 days a week, day and night.”
– a 50-year-old man with hemophilia
This eloquent statement was made by a person with hemophilia interviewed during an informal survey on the impact of pain. It reinforces the message that pain experienced by people with bleeding disorders is not well understood, assessed or treated. Forty percent of the people interviewed reported having pain all the time. Children also have pain and often have difficulty describing the level of their pain. Many adults, especially those with chronic joint damage, say that pain is the major element affecting their quality of life. Yet it is only recently that attention is starting to be paid to this serious problem.
The most common reasons given for not taking medication are that…
- pain isn’t considered bad enough
- side-effects are a problem
- access to a pain specialist is difficult.
The goal of this booklet, Roadmap for managing pain, is not to provide all the answers on pain management. Rather, it is intended as a guide, showing some of the different routes to take, some of the signposts along the way and, hopefully, destinations which provide some comfort and relief.
Just as importantly, it aims to encourage open discussion of pain and to help people realize that suffering in silence is not the best way to cope.
You can consult the online brochure by downloading the pdf below.