I’d practiced exactly what I was going to say in my head more times than I want to admit, but as I sat on the exam table my voice still shook and I could feel my cheeks flush red with nerves, “I’m planning on moving to New Orleans with Will because he got into medical school there. But I want you to know how completely committed I still am to my care and to getting better. I’ll be coming back as often as necessary to keep working together and use my parents’ house in the Bay Area as a second home base.” While I struggled to confidently deliver my rehearsed life update, the voice in my head berated me with doubt – “Does she think that I don’t care about getting better because I am moving? Will she judge me for doing this? Is she okay with me doing this?”.
I was afraid to tell my neurologist that I was moving to a new city. I felt overwhelmingly guilty, as if someone in my position (unable to work and resistant to so many treatments) didn’t deserve to move or focus on anything other than medical care. A part of me wondered if the cost I was expected to pay for this illness was placing my life on hold indefinitely; not moving forward, making changes or putting anything ahead of trying to get better. Although I knew that these feelings weren’t rational, it was impossible for me to shake the nagging guilt and anxiety over sharing my moving news with my headache specialist.
Trying to “get better” while living with chronic migraine has been as challenging emotionally as it has been physically. In almost every other area of my life, I’ve been able to achieve nearly any goal I set through hard work and diligence. But time and time again, migraine has seemed to give zero fucks about how hard I attempt to play nice or work with it. Trying handful after handful of new preventative medications, following doctors’ orders regarding diet, sleep hygiene and pain management, and modifying almost every area of my lifestyle have had inconsistent, slow and frustrating results. As downright confusing and challenging as my pain has been to treat, along the journey I’ve made progress in many other ways.
One of the most important ways has been allowing my definition of “getting better” to evolve. I’ve let go of success being singularly defined as getting back to my “old self” and achieving no pain. Instead, I work toward success by walking the tightrope between acceptance and hope every day. Gracefully accepting my circumstances and choosing to focus on the good in my world. Believing that I am working toward recovery and trusting that I will get there in my own time.
Admittedly, some days this feels impossible, and my efforts are put toward getting through each moment. But on many other days I’m able to find inspiration in connecting with others in this community, hearing success stories, being able to go on a longer walk than normal or visiting a friend without it triggering pain. I can now find comfort in deeply knowing that by trying my best each day with the circumstances I’m handed, I’m taking baby steps toward my larger goal, toward wellness and progressing from chronic back to episodic migraine.
Where I’ve found the most peace has been in letting go of the timeline in which this recovery will occur. Surrendering control and accepting that my situation will improve when it will improve. This doesn’t mean that I’m not still working my tail off to get there as soon as possible – practicing mindfulness, trying new preventative medications and constantly educating myself about my condition. But it does mean that I have accepted that while I work toward wellness I am going to live and love my life the way it is right now.
After wading through feelings of guilt about my upcoming move, I’ve finally wrapped my head around it in a way that feels healthy. I am not moving on from tackling my health challenges, but moving on with them. Living in accordance with my values – healthy and reciprocative relationships, helping others, enjoying nature, learning new things – are all as important as fighting to recover. Moving with a partner who I love so deeply to help support him in pursuing his dream aligns closely with these values, and something I’m excited and grateful to get to do.
Giving myself a permission slip stating “I am allowed to live my life while battling migraine” is still a work in progress. A few good hours in a day can send me into a tailspin and questions like, “if I feel well enough to go on a walk, does that mean I should try to go back to work immediately?” or “do I deserve to go on vacation even though I am battling chronic migraine?” , can overwhelm me with feelings of anxiety and inadequacy. But every time I answer those questions with a voice of confidence and strength that I am allowed to live my life despite chronic illness, I know I am making progress.
Though some days are better than others, I’m striving each day to find balance in this murky land of chronic migraine. To allow my challenges to make me stronger and more compassionate, instead of bitter and angry. To grow where I can and to put as much effort as possible into creating a life that I love despite my pain. I hope that when I speak with my neurologist next, I can be rooted in this truth and drop all of the unnecessary guilt and shame. And if this is something you’ve ever struggled with, I hope you can too
I share each step along my road to wellness and healing and hope that in doing so I can inspire you along your own path. Thank you so much for being here.