Having lived with migraine for as long as I can remember, certainly from very early childhood, one of the coping mechanisms I learnt early on was to push through. For many of us with migraine, or in fact any other chronic disease, “pushing through” often becomes a way of life. However, one of the things I’ve been pondering the past few years is how healthy that coping mechanism truly is. Especially when it becomes our automatic “go to” behavior. Looking back on my life, I realize that some lessons are particularly tough for me to move from the “I get it” phase to the “I’m going to implement that” phase. This lesson definitely falls into that basket!
As my migraine has progressed and chronified, especially over the past few years, it has been really tough to find a balance between ACCEPTANCE, PURPOSE, HOPE, PUSHING THROUGH and SELF-CARE. However, after a particularly long “status migrainosus” attack earlier this year, I had plenty of time to sit and ponder these things. Most of that time I was relegated to my bed or couch, as this disease forced me to put a pause on things and figure out a more healthy way forward. These are some of the lessons that I have learnt and am trying to implement in my life:
Lesson 1: Accepting I Have Migraine
I know that I’m not the only one who has trouble accepting that they have migraine. Or more specifically, that migraine impacts every aspect of our lives. I want to fight against and refuse to accept my physical limitations. I’d even rather pretend sometimes that this is really “all in my head,” or that if only I reduced stress it would all go away! Of course, none of that is true. Migraine is a complex neurological disease for which there is no cure, and which is highly genetic. In fact, it is estimated that with one parent who has migraine a child has a 50% chance of also having the disease – that risk goes up to 75% with two parents.
In my family migraine is rampant – somehow it seemed to miss my parents, but grandmothers, siblings, nieces, nephews, and all three of my sons. Refusing to accept that I have migraine does no-one any good, least of all myself. Once I am willing to accept not only the disease as it is right now, but also understand what can make it worse, it allows me to make wise and healthy choices about my lifestyle, healthcare, and every other aspect of my life. Acceptance doesn’t mean admitting defeat – rather it means being realistic so that I can move forward wisely.
Lesson 2: Rediscovering Purpose for My Life
We live in a society that puts a huge emphasis on career and what you are able to do. What this means is that when chronic illness starts limiting your career and aspirations it is easy to feel lost. That feeling is only magnified by the stigma imposed by society when you can’t do what others can do. When I finally had to stop working full-time because of migraine it was in many ways a huge “mind trip.” What had happened to all my dreams and aspirations? Was everything I had done until now a waste of time? What purpose could I possibly find when at any moment my life could be temporarily halted by a massive migraine attack?! However, the truth is that there is ALWAYS purpose to our lives.
I’m not a huge fan of the saying, “When one door closes another opens.” However, there is definitely truth to the fact that there is always something we are able to do, even if that something is from our bed or the couch. For me, that new purpose was patient advocacy. Realizing that I could help make a difference, and not let the pain go to waste, was transformative. Finding purpose grounds us – even if that purpose is not what we had originally planned for our lives.
Lesson 3: Reminding Myself There is Hope
There is a fabulous article by Adam P. Stern, MD called, Hope: Why It Matters (Harvard Health Publishing). Dr. Stern writes, “Hope can be an opportunity for us to process events that seem insurmountable, [and]… it is an essential component of our well-being.” So many of us with migraine find ourselves feeling hopeless at some point or another. That is one of the reasons that the rates of suicidal ideation and even suicide attempts are so high, particularly for people with chronic migraine. Reminding myself there is hope is crucial for my own mental well-being, as well as for enabling me to keep doing all I can do to manage this disease. For me, hope is found by researching all the treatment options that are in the clinical pipeline. It is reinforced by my healthcare team who remind me that even the worst migraine attacks eventually stop. It is helped by my friends who are there to offer a listening ear whenever I am most discouraged. And when I am at my lowest, my husband is there to speak into the discouragement and exhaustion, giving me the strength to keep going. Holding onto hope is essential – no matter the challenges you face.
Lesson 4: Pushing Through When I Have To
One of the things that often seems to confuse people who don’t live with migraine, is how those of us who do make our choices. It can seem fickle at times, or even to an outsider as though we are “using” our disease as an excuse. However, migraine is complex and so are the ways we learn to manage it. The connection between the body and mental health is well-established, and that connection is something that people with migraine try to balance. We know that we have to stop during the worst of attacks, and we know that there are some things that will absolutely trigger attacks or at least increase the probability of getting one. However, we also know the excruciating impact of loneliness, isolation, feeling left-out, and guilt.
There are times when we have to make tough choices. For me, that means being present at some of my children’s events despite being exposed to perfume, noise and bright light. It means that sometimes I need to go away on vacation and risk the triggers that are present in a hotel or during fun activities. Sometimes I need to “push through” for my mental health. Sometimes I need to “push through” just because an event is too important to miss – such as a family wedding or speaking event. That doesn’t lessen the impact of living with migraine, or mean that it is any less disabling. It just means counting the cost, realizing that I am likely to need to take more medication than normal, and that I may end up totally crashing for a while afterwards. Sometimes pushing through is necessary – even when the physical cost might be huge.
Lesson 5: Making Self-Care a Priority
When you live with a disease that is unpredictable and can floor you at any moment, there is a natural tendency to prioritize activities and responsibilities over self-care. I have often found myself thinking something along the lines of, “I’ll just take care of these things first, and hopefully I’ll have time, and feel well enough, to take a walk or do something relaxing afterwards.” Sadly, all too often what has happened is that I exhaust myself taking care of everything I “think” I need to do, and then have no time for self-care. The result? Anxiety, depression, exhaustion, and even a feeling of hopelessness. We’re not designed to be robots – rest and self-care is essential for all of us. How that looks for someone with migraine, however, may be a little different and challenging – but it is crucial!
For me, self-care means taking a gentle walk somewhere beautiful, pottering around in my patio garden, reading, doing puzzles, jigsaws, bubble baths, painting, or just going out for coffee with a friend or my family. In short, it is anything that brings a smile to my face. I am learning not only to actively cultivate self-care, but also to let go of the guilt that says I’m not worth it because I spend too much time sick. Stopping to smell the roses is now something I literally do on my walks. Thank goodness roses don’t trigger my migraine! Self-care is a foundational part of the migraine lifestyle – even when it seems as though time is not on your side.
You Are Worth It!
The big question for myself is whether making self-care a priority will last. One would think so bearing in mind the physical and mental impact of not doing so. However, we are all human, and we frequently have to remind ourselves about lessons that we have learnt. There is no shame or blame in that – it’s just a fact of living with chronic disease. We don’t want to be sick. We don’t want to sit back and watch the world move on while we’re not able to. We want to be “normal,” whatever that is! However, once self-care is a central part of your life, it is empowering and transformative. So if you find that you’re not making self-care a priority, I encourage you to pause, regroup, and remind yourself that you are worth it! And I’m going to remind myself of that too!