Life with Migraine: Struggling with Chronic Illness Burnout and Learning How to Cope

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As someone living with chronic migraine, I know from personal experience: Life with chronic conditions can cause feelings of exhaustion, stress, and overwhelm, or what is known as burnout. Not much is known about how burnout affects patients, but it can negatively impact clinical outcomes. And beyond that, it can make it hard to continue doing everything you need to do to take care of your health.

It’s time-consuming

Chronic illnesses take up a lot of time. It feels like a full-time job managing doctor appointments, medications, and symptoms. There are no days off from it, and the physical exhaustion can be extremely taxing. There is hardly any energy left to enjoy activities, hobbies, or social engagements. It is a highly isolating and stressful experience, which can lead to feelings of resentment toward our bodies.

Having intractable migraine means I am always in the headache phase of a migraine attack. Some days are better than others; however, I am constantly managing symptoms like nausea, vertigo, and pain. Doctor appointments are frequent, with some requiring at least an hour to travel to get to them. I find that I barely have any energy to take care of household chores or make a meal. Pacing myself and gauging how I feel each day helps me determine what I can manage throughout the day.

It’s costly

Medical debt can add up quickly when you have chronic illnesses. Health insurance helps with the financial burden but does not alleviate the anxiety of paying medical bills. Being chronically ill is expensive, and not all treatments are covered by insurance. For example, many complementary and alternative therapies, such as acupuncture, massage therapy, supplements, and some medical equipment, are not covered by insurance and must be paid out-of-pocket. 

It is not uncommon for people living with chronic diseases to approach their treatments holistically and incorporate more non-traditional therapies into their management routine. These costs add up quickly and can contribute to feelings of burnout from the financial burden of the disease. Between the out of pocket costs of massage therapy, supplements, and the neuromodulation device I use to manage my daily migraine, I spend hundreds of dollars a month just to maintain a semblance of normalcy. 

This does not include the cost of copays for appointments and prescriptions or the cost of gas and tolls to get to my appointments. Having a flexible spending account to cover these medical costs is very helpful, but it does not alleviate the stress of having to spend so much.

Navigating the healthcare system

The healthcare system is not the easiest to navigate. Many barriers can affect the quality of care we receive. Unfortunately, things like someone’s race and ethnicity, sexual orientation, gender, geographic location, and socioeconomic status can negatively impact the level of care a person receives if their medical team discriminates against them.

As a Black woman, I have been faced with biases from physicians who simply did not believe that my illness was valid and worthy of treatment. It is exhausting and anxiety-inducing not knowing whether my race and gender will interfere with the quality of care I deserve to receive.Too many instances have occurred when I was completely dismissed, undertreated, and invalidated, resulting in some level of medical PTSD. 

Insurance policies, such as step therapy or fail-first, interfere with the patient-doctor relationship and can harm the patient by making them wait months to receive the initial therapy or treatment their doctor prescribed. Step therapy is a process in which patients must try and fail one or more medications selected by their insurer before obtaining the optimal treatment recommended and administered by their doctor. I have experienced this many, many times, making it extremely difficult to see positive results and only furthering my level of disability.

Treatment burnout

I have lived with chronic migraine for almost two decades, and throughout that time, I have not had much success in treating the disease. Trying to manage daily, continuous migraine attacks for such a long time has taken its toll on me mentally and physically. 

Having tried dozens of treatments and therapies, without a decrease in how many migraine attacks I experience each month, has resulted in treatment burnout. I am exhausted from the mental strain of getting my hopes up, only for them to be dashed when treatments fail over and over again.

There are periods when I do not want to try another medication or continue going to my many medical appointments. The exhaustion from constantly managing my disease creates a feeling of numbness. I am tired – mentally, physically, and emotionally. Finding ways to remain resilient isn’t always easy, but it is possible.

Ways to find support

Experiencing chronic illness and treatment burnout can result in feelings of apathy, isolation, and frustration. Knowing many ways to obtain support through this overwhelming time is essential. Here are some of the tools I utilize when feeling burned out.

  1. Talking to a therapist

Having support from a licensed therapist that you trust is super helpful when working through chronic illness burnout. Being able to talk about the challenges of living with migraine allows me to unpack those emotions, and my therapist provides support through listening and offering coping strategies.

  1. Find a peer support group

There are many support groups available depending on what you are looking for. It is beneficial to have peers who understand what you are going through. Having a place to go, whether in person or virtually, where you feel comfortable, safe, understood, and supported can help validate your experiences.

  1. Engage in self-care activities

When feeling burned out, self-care is vital! There are many simple ways to care for yourself, like watching a favorite movie, spending time with your pets, doing a simple meditation, coloring, or reading a book. Energy levels change from day to day. If you feel more motivated and energized, try walking or engaging in your favorite hobby.

  1. Talk to your healthcare team

If you feel burned out, talk to your healthcare team about it. It’s okay to feel exhausted from managing your illness, and your doctor can help you find ways to cope, too. I have found that talking to my healthcare team about what I am experiencing allows them to truly see how hard it is and how diligent I am working to get healthy. It also allows medical professionals to share resources and alternative coping and management strategies with me that are often useful.

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THIS TOOL DOES NOT PROVIDE MEDICAL ADVICE. It is intended for informational purposes only. It is not a substitute for professional medical advice, diagnosis or treatment. Never ignore professional medical advice in seeking treatment because of something you have read on the site. If you think you may have a medical emergency, immediately call your doctor or dial 911.