Importance of Caregivers: Including their Support and Advocacy
People with fibromyalgia are most often the ones who create and enact awareness and advocacy programs on their own behalf. Other illnesses such as cancer, heart conditions, Parkinson’s, and a myriad of other well-known medical disorders have volunteers and their specific medical communities who carry the weight of these types of events and programs. People generously donate to these nonprofit groups as well; one reason being that so many people (other than those who are ill) are educated and enticed by a particular patient group to contribute and volunteer their time. Maybe it is because fibromyalgia is still mostly overlooked and ignored by the medical community in general which may cause social and public apathy and misunderstanding about the severity of this illness. The doctors who usually support their patients often turn their backs on people suffering in chronic pain. They are disgruntled by still not knowing or understanding how to diagnose or treat fibromyalgia, but this should not be an excuse to dismiss people in their care who are suffering.
(CONTINUE HERE from December 30, 2012 FM & Chronic Pain Advocate Newsletter)
An example of these discrepancies is the Race for the Cure, a benefit for breast cancer research. At this event thousands, if not millions, of people run and walk in honor of women with breast cancer and survivors. Yes, some of the walkers are patients, but many more are caregivers, family members and friends who gather pledges to donate to the American Cancer Association to help further breast cancer research. The Multiple Sclerosis Society holds an annual, national bicycle ride as a fund raiser for its members affected by this neurological disorder. Rarely do you see an MS patient participating in the bicycle ride because their physical symptoms just wouldn’t allow it. So, why is it expected that participants in fibromyalgia walks and other physically challenging awareness events have to be people with fibromyalgia?
It is time that fibromyalgia caregivers, loved ones, and friends support the people who suffer the effects of living with this chronic pain condition. It is time that donations are collected and made on their behalf to the patient organizations that support them and to researchers who look for treatments and cures. It is time for fibromyalgia to come into its rightful place as a mainstream condition worthy of respect from medical professionals as well as the patients’ families, friends and other loved ones. So this year, let’s push harder for more recognition and support of people who continue to suffer with this ailment and rally their supporters to carry the banner for donations, awareness and recognition of fibromyalgia.
