Migraine has stolen so much from us — friendships, family events and jobs. Migraine has no limits. At the beginning of our chronic migraine journey, we were young with high ambitions and felt indestructible. We worked long hours and were too busy to slow down for ourselves. We ignored our bodies and even avoided taking abortive medications thinking that we were weak for needing them. When our diseases worsened from episodic to chronic intractable migraine, we were devastated and struggled to appreciate life in our altered reality.
It took a lot of time and therapy for us to accept that changes were needed to help manage migraine. However, those changes don’t define who we are. We still find happiness and purpose, despite not feeling well. We try not to take good things for granted, and we appreciate the things that matter most to us. Whether that’s spending time with loved ones, enjoying nature or doing art therapy, focusing on what we have helps ease the hurt of everything we’ve lost.
In addition to practicing gratitude for what we have, we appreciate some of the lessons and good things migraine has brought us.
Normality is a paved road. It’s comfortable to walk, but no flowers grow on it. —Vincent Van Gogh
Without migraine, we would be missing an entire community of compassionate, strong migraine warriors who we’ve met along our journeys. We have gained friends from across all walks of life, and we are better off because of it.
Before chronic migraine, we skipped lunch breaks, rarely took time for ourselves and were always on the go. Now, our super sensitive migraine brains react to little things such as staying up too late or exercising intensely. As a result, self-care has been a survival technique for us long before it was a trending health topic. Over time, we’ve even come to appreciate the necessity of self-care.
Part of self-care is making sure we physically take care of ourselves to the best of our ability. We practice good sleep hygiene, hydrate, try to eat healthy at regular times and practice stress reduction, particularly relying on nature, walking, meditation and spiritual practices.
Another way we take care of ourselves is by meeting our emotional needs. We can be hard on ourselves sometimes, so we practice compassionate self-talk. We remind ourselves that we are doing our best and we should be as kind to ourselves as we would a loved one.
Resiliency on our Chronic Migraine Journey
After trying countless migraine treatments that have failed, we’re well-practiced in the art of perseverance and never giving up. We’re more likely to have patience with problem-solving and think outside the box. We know that if one solution doesn’t work out — just as there are always other migraine treatments to try — there are always unexplored solutions we can try moving forward. We’ve learned that sometimes you have to let go of how you thought life would be and appreciate what is.
We Appreciate the Little Things
[I have to have] appreciation for the small things because I don’t get to have the big things anymore. —Gillean
Migraine is awful, and it’s very talented at making us feel awful too. To combat this, we have learned to focus on the little things. No matter how bad we feel, there is always something we’re able to be grateful for. Nothing is too small to appreciate — the feel of a warm breeze, a cup of tea or a bird singing can bring joy. Before chronic migraine, we chased after the big things in life without slowing down to realize that there are beautiful things happening in the present alongside chronic illness.
Throughout our migraine journeys, we began to learn how to be our own advocates. At first, we followed our doctors’ orders and took any medication they prescribed. We didn’t handle all of the drugs very well but kept going; after all, doctors know best, right? However, some severe, disabling, and life-threatening side effects taught us to be more cautious. We learned to speak up and ask questions. We learned to say no when we weren’t comfortable and stood up for ourselves. We are open to discussion and education, but we also set boundaries and hold firm to the important ones.
After all the hours we’ve spent at different doctors’ offices, we’ve picked up a trick or two to make visits go smoothly. We always have a medication list handy, and we prepare a few things to discuss. We’re so prepared that on more than one occasion we’ve been asked, “Are you a nurse?” We’ve also spent a great deal of time working with our insurance companies and pharmacies on pre-authorizations, copay cards and deductibles. Over time, we’ve learned that patience and kindness can go a long way toward achieving our goals.
Compassion and Empathy for Others
If you don’t know someone with a chronic illness or have one yourself, it’s difficult to understand how hard it can be. Some days, just getting out of bed is a herculean task. The stress and pain of dragging yourself to the store, pharmacy or doctor are beyond exhausting. We struggle ourselves, so we’re more likely to be understanding toward others. Many chronic illnesses are invisible, and you never know what someone’s really going through. When we’re with a fellow chronic illness warrior, we have empathy and know how tough their illness has forced them to be.
Empathy is about finding echos of another person in yourself. —Mohsin Hamid
The Purpose We Found on our Chronic Migraine Journey
While we would rather not live with migraine, we are grateful for the lessons it has taught us. We know how strong we are; we take better care of ourselves; and we are more mindful and appreciative of the smallest of things. Like a phoenix rising from the ashes, good things can emerge out of migraine.
Holly Gerring-Leone & Gillean Dean