One of the trickier aspects of fibromyalgia is having to cope with new limitations.
Another is the fact that its symptoms are not readily apparent—fibromyalgia is often referred to as the ‘silent disease’—and unless a patient is expressing their pain verbally or through physical cues, the disease often goes otherwise undetected by others. Some patients are even accused of totally imagining the disease, or blowing the symptoms out of proportion. As a result, patients often appreciate being able to talk about their pain and discomfort without judgment from loved ones.
It is therefore important for loved ones to lend a listening ear. Despite showing no visible signs, the symptoms of fibromyalgia can be quite debilitating for most patients.
There are a few simple ways that loved ones can help their friend or family member suffering from fibromyalgia.
The first step is to listen to their experience with the disease while trying not to insert one’s own biases or amateur diagnoses. Simply being there to hear what they are saying while showing them that you are there to support them is a crucial means of helping those affected by the disease.
Oftentimes grief arises as the symptoms persist, and patients come to grips with fact that the illness is something that will affect their lives on a daily basis. Once-easy tasks or activities, such as opening a jar of jam or playing certain sports, may now cause significant duress—at which point sufferers tend to feel negative about themselves. It is important for close friends and family to show support as their loved ones pass through the commonly experienced stages of grief associated with the diagnosis. Expect a myriad of emotions—especially expressions of anxiety and stress—as the reality sets in.
Diagnosis can take a long time and involve several different types of testing, all of which can take an emotional toll on loved ones. For perhaps years, symptoms of the disease may have manifested themselves in various ways, and as the diagnostic process goes on, there may be doubt and uncertainty as to underlying cause—the patient may even start worrying about the possibility of life-threatening worse-case-scenarios. As specialists rule out other conditions with overlapping symptoms, such as rheumatoid arthritis and lupus, loved ones should make sure to be present and supportive during the often tiring process.
Being present may mean accompanying the affected friend or family member to doctor appointments. Doctors may ask loved ones about how symptoms have appeared from their perspective, thereby adding to a more well-rounded diagnostic process. Since pain and fatigue can inhibit a patient’s ability to express themselves clearly and precisely, having a family member or close friend there can increase chances of better communication.
Many people suffering from the condition feel as if nobody else understands what they are going through. It is critical for loved ones to inform themselves about the symptoms and mechanics of the disease so that they can more effectively care for the person suffering, as well as make appropriate adjustments to certain aspects of their living situation.
Anxiety and stress can flare up quickly, meaning that the person affected may not be at their emotional best—sometimes acting crabby, or even slightly belligerent. Once loved ones understand this, they should be less likely to take negative outbursts personally, and rather accept them as part of the disease. It is therefore probably best to avoid unnecessary arguments as much as possible.
Memory problems may also arise, so it may be wise to not overburden those suffering with tasks, such as having to remind other people of scheduled responsibilities or any kind of strenuous planning.
Symptoms will fluctuate on a daily basis, which can add to frustration. But with a thorough understanding of the disease, and knowing the reasons behind some of the patient’s behaviors, loved ones may work collaboratively to alleviate and minimize symptoms.
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