Many studies have showed the effect that chronic migraine has on patients’ lives, but few researchers have taken an in-depth exploration into just how impactful it can be on quality of life. With chronic migraine affecting approximately 4 million people worldwide, it is essential for physicians, family members, and patients to better understand just how deep this impact runs. A recent study found five common themes in the lives of chronic migraine patients that we explore below.
#1—Stigma and shame of invisible illness
The first theme that emerged was shame. Individuals who live with an invisible illness face many obstacles on the path to treatment. Not only are these diseases challenging to diagnose—which is reinforced by countless studies that show migraine is mis- and under-diagnosed—but patients often must visit multiple doctors just to get a correct diagnosis. In addition, the fact that symptoms do not immediately and overtly present in front of others creates misunderstanding and is a source of ongoing stigma from both medical professionals, family members and peers. As a result, this creates a high level of uncertainty in the management and acceptance of their chronic condition.
#2—The paradox of migraine medication
Not surprisingly, people with chronic migraine often recognize that being completely pain free is not realistic, so they desire treatment options that reduce pain in order to enjoy a “normal” life. Oftentimes, this results in a strong distrust with prescribed migraine medication—primarily due to their inconsistency and ineffectiveness in providing symptom relief. And yet, many also believe that acute medication should be part of their daily treatment toolkit to minimize pain at the onset of a migraine attack. Long-term preventive medications are met with similar skepticism as well because of the possible side effects that can come with them. Consequently, patients tend to abandon them if they do not experience positive results in the treatment of their chronic migraine.
#3—The doctor-patient dynamic is critical to care
Chronic migraine patients expect honesty and direct dialogue with their doctors and/or headache specialists, including the progress of the condition and the prospect of treatment options. They want to be given recommendations for migraine alternatives that provide a real chance at reducing their pain. But more than that, they want to feel sympathy, understanding and support from their doctors. As they experience stigma in their personal and professional life as a result of chronic migraine, they do not want to have similar issues related to their care. Some common provider pitfalls that could lead to a breakdown of the doctor-patient relationship include:
- Prescribing a previously unsuccessful treatment
- Continuing an ineffective treatment for long periods of time
- Addressing chronic migraine as a 'minor' symptom or condition
- Explaining the condition based on broad stereotypes about women
And who could blame them for wanting meaningful involvement and support from their physician!
#4—The unhealthy focus on pain
“Everything revolves around pain.” It is a statement that is as difficult to swallow as it is true for people with chronic migraine. This persistent focus on the pain not only impacts patients’ behaviors, such as avoiding known triggers that can lead to an attack, but it also exacerbates emotional side effects. Just some of these issues include anxiety, depression, irritability and mood swings. What’s worse is that these emotional consequences often impact their relationships with family and friends, making it a difficult cycle to break.
#5—Issues with family and work
The workplace is not one of high understanding of the impact of chronic migraine. The stigma of migraine attacks being a 'just a headache' is a serious concern, and it leads to some difficult choices on the job. For example, many attempt to hide any symptoms or simply endure the pain in an effort to avoid losing their job. On the other hand, patients do experience greater support from family members and close acquaintances, although they are not completely immune from others who may question the extent to which the condition impacts them. Perhaps most the most powerful admission from patients in this study is the fear that their genetics and/or behaviors may ultimately lead to their children developing migraine in the future.
These can be some tough conclusions to read and discuss, given the amount of stigma, skepticism and pain that is experienced by those with chronic migraine. But we also believe the revelation of these issues help bring greater awareness for medical professionals, family members, and friends. Moreover, it continues to reinforce the importance of developing MEANINGFUL preventive treatments and that these treatment options should not be considered in isolation—but as one piece of a larger puzzle of care for migraine patients, which includes physical and emotional symptoms.