Introduction
As an advocate for the American Migraine Foundation, I would like to bring more attention to the complexity of living with this disease and the emotional and mental impact it can have on one’s life. It is not only a grueling physical challenge but also comes with emotions with grief and loss over many things.
I openly share my recent journey of having to leave my job behind due to worsening chronic migraine. This post is meant to bring awareness to all these silent, hidden migraine losses that we experience and how to cope with them.
My personal story of hidden migraine losses
At the height of my career, I led global teams on a mission to bring life-saving technologies to patients worldwide. My role empowered me to make significant strategic decisions that shaped the trajectory of the companies I worked for. Meeting patients who survived due to our life-saving technologies filled my heart with joy and pride in our team’s work.
Of course, there were challenging aspects of my career too. Constant pressure and the demanding nature of the job meant work rarely ended at 5pm. Traveling the world seemed glamorous, but with migraines, it was incredibly challenging. Being away from my daughter was even harder, although it provided financial stability, a comfortable home, and all our needs met. We had special vacations and experiences we wouldn’t have had without my wonderful career.
However, at the lowest point of my worsening migraines, I woke up at 4 am in a hotel room thousands of miles away from home, throwing up from an enormous migraine attack. The drastic climate change from mild winter to the high heat and humidity of Florida, combined with a 6-hour flight, triggered a severe attack. With no one to help, I was fearful of how I would get back home. I endured 12 straight hours of vomiting and raging pain, despite taking all my migraine medications.
When these raging migraine attacks became a daily occurrence, I knew I had reached the end of the road in this chapter of my life. A range of emotions overwhelmed me, from anger and a sense of failure to profound sadness. My body simply couldn’t endure it any longer. It was time to make a difficult but necessary decision.
I needed to prioritize my health and be there for my daughter, career or not. The choice was as obvious as it was painful. I told myself that reinvention is a natural part of life and took the plunge into the unknown. It started with medical leave, followed by short-term disability, while I slowly assessed what I needed to do and how to proceed.
Recently, during a conversation with a former colleague, he praised the skills and contributions I brought to the table when we worked together. While it was sweet to hear, it also filled me with sadness, reminding me of what I had lost.
Losing a job due to migraines is a common occurrence, as migraines rank as the second leading cause of disability worldwide. While we often discuss the statistics and the global impact of the disease, we need to have more awareness and conversations about the personal losses and the crises that migraine can create, financially, emotionally, and in all aspects of our existence.
Let’s explore the different areas of our lives where migraines lead to a sense of grief and loss.
Hidden migraine losses span many areas of our life. From my own experience and that of other people with migraine that I talked to, there were at least 10 areas that came up.
Loss of Control:
Migraines can make your day completely unpredictable, leading to a feeling of your life being out of control. At times when I have to manage pain for a long time and migraine simply persists, I feel helpless and frustrated. This loss of control is very challenging to cope with emotionally.
Altered Plans and Goals:
For me personally, the inability to carry out planned activities or achieve goals can be a significant source of grief. Migraine attacks may force you to abandon plans or readjust aspirations.
Identity and Self-Image:
Migraine can affect how you see yourself and your abilities. Since my exit from corporate jobs, I experienced grief over the loss of my previous self. My self-image suffered because I felt my capabilities diminished significantly. I had to find a new identity with which I was at peace which is a journey that requires courage and faith.
Independence:
Migraines can impact an individual’s ability to take care of themselves independently. On days when migraines are especially intense, you may grieve the loss of your self-reliance and worry about needing to rely on others for support.
Unmet Expectations:
I want to wake up full of energy and go through my day as I laid it out ahead of time, working out with ease, being a mom who frolics with their kids in the pool effortlessly, and doing a prestigious job that I was used to do.
My reality is often far from this image. I live with the ongoing sense of having to tailor my expectations. And never up. I grieve the gap between what I desired life to be like and the reality of living with a chronic condition that disrupts my plans and dreams.
Quality of Life:
Some days, taking a shower is a success when a migraine hits. I am not able to enjoy the simplest things in life like bright sunshine or a cold snow day. At times it feels like living in a small matchbox with no room for deviations or errors.
Not too much sleep and not too little, no sudden changes in weather, no changes in daily routine for foods/drinks, exercise but not too vigorously! Keeping everything just right is exhausting in itself. The limitations imposed by migraines reduce the overall quality of life. This can be a source of grief as we mourn the life we once had or envisioned having.
Fear of the Future:
The uncertainty of when the next migraine attack will strike creates fear and anxiety about the future, leading to grief over the loss of a stable and predictable life. Because I often wake up from an early morning migraine around 4am, I feel anxious going to bed. My life never feels predictable.
Social Connections:
Migraines interfere with social interactions. Not everyone is equally understanding toward someone who has to often cancel plans or cannot be there when you need them. The hidden migraine losses include lost friendships, connection opportunities, and experiences.
Perceived Burden on Others:
The guilt I feel when I cannot participate in activities with my daughter is real. I worry about the impact of migraine on my family. The last thing I want to be is a burden to them. When my migraines turned chronic, I was overcome by guilt and sadness at the notion that my condition burdens those around me.
Sense of Normalcy:
The normalcy for someone with migraine can look quite different. I remember having a sense of normalcy before I turned 9 when migraine attacks started. After that, I only know the normalcy as defined by this condition. Normalcy to me means routinely doing things while in pain.
I am sure there are more hidden losses associated with migraine. I had to cope with all of these at some point in my migraine journey. Anyone with this disease needs to have access to resources that would help keep people with migraine alive.
Mechanisms to cope
I can’t really say that reaching a state where there is no sense of loss is possible when living with chronic migraine. But I can attest that some days are better than others. Often a quick prayer or reminder about self-acceptance puts me on a better track. Coping with the grief and emotional challenges caused by migraines can be a daunting task.
Here are some coping mechanisms that I found to be effective if you to deal with hidden migraine losses on a daily basis:
Redefining what success looks like
I used to put a lot of pressure on myself about all the things that I could not get done during a migraine attack. Then I examined how many things I was able to accomplish on those days when I felt well. It was a lot. Probably a lot more than any average person. This insight was derived during one of my coaching sessions with my health coach. It truly helped me to redefine what success looks like for small and big things in life.
Embrace small victories on migraine attack days.
For migraine attack days, ask yourself – what one small thing can you achieve as a success today? Maybe it’s being able to eat and keep your food down, or taking a refreshing shower like I do. It could be sharing a meal with your family. Embrace these small victories, no matter how modest they may seem.
Take a few minutes each week for self-reflection.
Acknowledge what you managed to handle and let go of what you couldn’t.
Own your choices and journey.
Migraine will require re-defining big successes too. Like the decision to have or not have kids, the desire to take on marriage commitments, and the capacity for big career building. Once you define and redefine what success looks like to you on a bigger scale, be at peace with it and never apologize for your choices. You are the one who has to live in those shoes.
Living in the present
Being present in the moment is such a popular concept and a lot is written about how to do it. I am a very pragmatic person and prefer simple strategies that can change the trajectory of my day, but don’t take much time or energy to implement.
I recommend you start being present for 1-2 tiny things during your day. The simplest things will do like:
- Enjoying hair brushing or any grooming
- Look up at the sky for 1 minute
- Smile at the neighbor
- When your kid is telling you about their day or the book they read, look at their face and eyes. Connect to what they are saying.
- When you water your plants, see the drops of water glistening in the daylight. Appreciate their beauty.
- Stand on the grass for 1 minute. Feel its texture on your feet. The cool earth underneath.
These things often shift the focus from suffering to living. Even if it is for a few minutes.
Meaningful relationships
Cultivate relationships that nurture you! Living with migraine doesn’t always leave you with much energy to spend on social interactions. You need to become selective about relationships and how you spend your time. Learn to tune in to how people make you feel and if you want to be around them.
In my case, family is everything to me, so I choose to spend most all of my energy on my daughter and husband. I don’t regret that I only have one true friend. The quality of all my relationships is much deeper as a result. These handful of people are my pillars when it comes to dealing with grief and loss due to migraine.
Connecting to larger purpose and meaning
Explore activities or causes that speak to your deepest values. It could be practicing your faith or being part of an organization that gives you a sense of meaning and a larger purpose. No matter what you do, consider how your experiences can inspire others facing similar dilemmas.
I started MigraineLiving blog to connect myself to a larger purpose. It led me to become an emerging advocate for several organizations in this space whose mission aligns with my mission to raise awareness about migraine. Through this advocacy platform, I am not only building a community that provides support for others but also finding the much-needed support in return. You won’t feel as alone with your losses when you connect to something bigger.
Seeking professional help
It goes without saying that having these coping strategies may not be enough. Don’t be afraid to seek professional help. Therapy, coaching, digital apps, patient group meetings, Facebook communities – whatever you need to deal with hidden migraine losses, start reaching out. Don’t deal with it alone.
Summary
Migraines can cast a shadow that touches every corner of our existence, leaving behind the unseen marks of grief. The hidden migraine losses reverberate through various facets of our lives, challenging our sense of control, altering our plans and aspirations, and shaping how we perceive our own identities and self-worth.
Don’t deal with your grief and loss alone! Discover effective coping strategies to cope, including redefining success, cultivating meaningful relationships, connecting to a larger purpose, and seeking professional help when needed.
Migraine Blog
If you are interested in reading more from Anastasia on living with migraine please click on the button to the right to see the full list of her blog articles!