Chronic Pain VoxPop.

Welcome to the first in an occasional series of blogs that look at the real lives of people with various different medical conditions and allows them to tell their stories in their own words.  The aim of this series is to allow us; and you, our readers, to explore what real people  actually think. As you may know PatientTalk.Org runs a series of groups and pages on Facebook and other social media.  For this VoxPop blog we asked our communities the simple question “What are the biggest challenges of living with chronic pain?”.  This gives an opportunity for our members to share their thoughts and opinions on the subject.  The VoxPop goes beyond just sharing our communities’ view.  Our hope is that the readers of this blog will, in turn, contribute their views and comment on other peoples’ opinions.

The results (of this VoxPop) are fascinating.  Here are twelve of the most typical and also the most interesting comments from our readers:-

• “Feeling useless. As I was never of the go. . Feel as if my family don’t understand it all. The pain that we are all in and feel as if no one believes you.”
• “Being conceived as a liar or an addict.”
• “Convincing people I am actually in pain!! a family member said that she’d love to earn money suppose to be in pain but able to post pictures on facebook!”
• “Being in pain non stop an having to clean my house and laundry some days it’s hard to get out of bed!! I have family members saying your always saying your sick!! Just one day o would love for the people that say that stuff an see how they handle non stop pain an having to be a wife and a mom of 2 teenage boys!:'(“
• “Not being able to make long term plans. Stopped joining things that I enjoy,as having to cancel at the last min. has become all too frequent.”
• “Unpredictability of how you feel day to day…pain meds that make you even more tired…neuro-typical family and friends having no idea what you are living with moment to moment…not wanting to complain”
• “Coming to terms with the fact that I will never feel like I used to before I started having symptoms & my diagnosis. Hard to fully comprehend that the pain, fatigue, & multiple other symptoms will be apart of daily life forever.”
• “The biggest challenge for me is that it has totally changed my lifestyle, and the dark way that makes me not able to be counted on is a challenge I hate the most. It has isolated a used to be extremely social person.”
• “Living in the 21st century but yet there is so little awareness (known) about Ankylosing Spondylitis…something is very frustrating about this and the lack of medical coverage to pay for us yo be guinea pigs!”
• “The pain changes – it goes from burning to shooting, to painful spasms. And all those types of pain are invisible so nobody could understand how it is to deal with them. Medication barely helps and I hate to take high doses so try to cope with as little meds as I can, also heating pads and ice. Tired of ever-changing pain, it almost never goes away, just changes.”
• “my husband agrees with you…says the fatigue is the worst. Says the pain zaps all his energy causing overwhelming fatigue.”
• “Everything! I’ve seen myself change from a bright young woman with loads of potential and hope for the future, into a bitter middle-aged woman who feels useless and worthless with little to no hope at all.”

As I said these are typical of the responses we received.   But how true are they for you?

Please share you views on these quotes using the comments box below.  What other areas should be covered?  Again please share below!

Thanks very much in advance!