"Will I be ok?" The effects of a pain condition, such as fibromyalgia, sciatica or chronic fatigue syndrome manifest themselves in a physical manner - pain and exhaustion are the primary symptoms of these conditions. When a patient asks a doctor about his or her diagnosis, they are primarily interested in the physical, top-level impact that this disease is going to have: Will I always be in pain? Will medication help? What kind of medications will I have to take to control my pain? Can I continue to lead my current lifestyle?
On another level, though, chronic pain sufferers may also be interested in asking questions about some of the social aspects of chronic pain conditions: How will my friends handle my diagnosis? How can I maintain a social life without any energy? How will my significant other and/or family handle my change in lifestyle? Depression is prevalent in an estimated 20% to 30% of all chronic pain sufferers and the lack of a social life could contribute to this epidemic.
According to expert patient Karen Lee Richards, "The truth is, many of us have no social life." She explained that as her fibromyalgia progressed, she was faced with the option of either working and supporting herself or living off of someone else and having a social life. After working, "there's just no energy left after that - I quit trying sometimes because I don't know how I was going to feel day-to-day." Richards said that by the time she gets ready to go out, she is too exhausted to go anywhere. This seems to be a common issue among fibromyalgia patients in particular, including community member Anna. She said, "It's not that I don't wish for good relationships, I just don't have the time or energy for them lately."
Family might not understand why you may not attend a reunion; friends may not understand why someone has to "rest" for an entire weekend after a standard work week. Because of misunderstanding - or disinterest in understanding - chronic pain patients may have guilt, sadness, or depression associated with broken relationships. Richards added, "It's more hurt than offended when someone doesn't understand; it's a deep hurt when those close to you may not believe you."
In other cases, the misunderstanding can take a hard line. Anna told a story of how her best friends' parents were convinced that she was an addict and actually took her medications away. Despite a trip to the ER, doubt still existed about the legitimacy of medication use. She also had a similar experience with her own father, where he feels she should be attending counseling for addiction. Anna certainly does not stand alone for being judged as a drug addict because of the medication she has to take for her condition. As Richards said, "We can only educate people about addiction versus dependence, but some don't want to be educated." Clearly, this misunderstanding is causing a rift between those with and those without chronic pain.
The root of the problem, according to those who contributed thoughts, was that nobody can understand what chronic pain patients suffer through. "No one can understand why I look fine on the outside, yet on the inside I am in pain and drained," said community member Virva. Richards echoed similar thoughts, "For most people with fibromyalgia, the problem is that we don't look sick - people look at us and can't understand." Among chronic pain patients, there exists both good and bad days, and apparent inconsistencies in symptoms have irked some friends and loved-ones.
Anna said that "pain controls my entire life." Those around her fail to understand and she feels that she "lives in another world that no one else is in." Virva said that "no one can understand why I look fine on the outside, yet am in pain and drained of energy on the inside." Virva referred to "mourning" the death of her social life. Several community members asked how to explain to a loved-one that the very touch from another can be extremely painful, albeit a handshake, a hug, or playing Ring Around the Rosie with a young relative. And yet, there is hope.
As Richards discussed, when she was diagnosed with fibromyalgia many years ago, a patient had to locate a book or journal article in a library to find any information about the subject; if the person was lucky, a support group may have existed in the area. And yet there were few outlets for support. For those who struggle with socializing on a consistent basis, online support groups have become a valuable outlet. Chronic Pain Connection, for example, offers access to information and support that did not exist some 10 years ago. For all of the complaints about those who do not understand, and for all of those who feel alone on an island, there now exist communities which can fill that void. Anna sums up this sentiment: "Online support groups help to keep me connected to the world even when I feel unable to venture out; it just feels amazing to speak with those who truly know what I'm experiencing."
Tell your story! What has chronic pain done to your social life? Have online communities played a role in helping to rebuild what may have been lost?
Published On: June 04, 2010