Coming to Terms With the Losses of Chronic Migraine

“I’m feeling not just the physical pain, but all that I have lost, and it is profound and catastrophic and will leave a crater in me that nothing will ever fill. But I’m also feeling all that I have in my life, which includes what I have lost, as well as the great unknown of what life might still bring me.”

If I Stay, Gayle Forman

This excerpt from the novel If I Stay is from the perspective of a 17-year-old girl who has barely survived a car accident that killed her parents and only sibling. She is wavering between life and death in a coma, trying to decide if she should re-enter her body and live or if she should let go and die. Obviously, these fictional circumstances are more dire than living with chronic migraine, but the weight of her words hit as if I’d thought them myself.

In some ways, the last decade of my life feels unlived, like I skipped from my early 20s to mid-30s without experiencing everything I expected in those years of my life. When I think of how I spent that time, lying on the couch, nauseated and with my head screaming is the image burned in my mind. And yet, I still did plenty in that time (just not as much as I think I should have). I’ve traveled to amazing places, developed wonderful friendships, helped care for ill parents, became a writer, lived in three vastly different cities, danced my heart out to lots of live music.

While I wasn’t living life as I imagined living it, I was fully alive in the land of chronic illness. I wasn’t always coherent and it was difficult to persevere (to say the least), but I was still learning, and growing, and changing as a person. All my relationships suffered, my physical strength and stamina diminished, my work ground to a halt, I was depressed. At times I didn’t want to live, but I still kept at the daily slog. In those years I felt like I wasn’t living, I was actually moving mountains.

I could have given up, either explicitly through suicide or no longer trying (to find effective treatment, to leave the house, to have some pleasure despite the pain), but I haven’t. I’m not sure how or why, other than the tremendous love of my friends and family, sheer stubbornness, a passion for life, and the “indomitable ability to slog through adversity” that Anna Quindlen writes about in Lots of Candles, Plenty of Cake. Maybe this is all it takes to keep on going, but it isn’t like this is an easy recipe to follow.

There’s also no guarantee I’ll stay as healthy as I am now. The medication may stop working, the diet may prove effective subterfuge or placebo, new triggers may pop up…. I’m squeezing out as much living as I possibly can, while also coming to believe that living with debilitating chronic migraine is just as much of a life as having an impressive career, spending loads of time with friends, and traveling the world. It is sometimes boring, I don’t always think clearly, and I’m frustrated a lot of the time, but I’m still breathing and being and experiencing everything in my environment. It isn’t the life I’d choose, but it isn’t all bad either.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (10)
  • tucker
    6 years ago

    This title TOTALLY sums up how I’ve been feeling the last month or so. Dwelling on all that my health has taken away from me. Unfortunately, it has taken a toll on me and I have come out on the other end and depression has set in. It took 10+ years of living with chronic migraines and 3 years of having some heart and other chronic pain/nausea problems but now I am over it. It’s more than I can handle and I’ve recently told my PCP I’m done with this nonsense. He is wonderful and amazing and completely understands. I was just going to see a therapist but decided to add “yet another med” to the million and a half I already take.

    I feel like even more of a failure now. This darn body of mine is failing so fast. My parents told me a couple years ago that I was sicker than they are. How sad is that? I am grateful nothing is ‘serious’ if you want to say that. Though I guess if you’ve been to almost every “ologist” in a 3 yr time span, had a gazillion tests, and have a cardiologist in your early 40’s that can’t be good…. Thank God we have decent insurance. I know they know me by name!

    But I thought that I’d live to be 100 at 25 b/c I was fit and trim and running and working out and eating right despite life long asthma. who knew <10 yrs later I'd be getting migraines right and left just like my mom? And 10 years after that I'd have a page full of meds, a list of "diagnoses", and a handful of specialists. Sigh…..

    Being the nerdy person I am, I've already come up with pages of info for my first meet and greet with the counselor. I've kindof figured out some of the medical, emotional, and "grief" problems from living with this body of mine. I have my good list, my bad list and my goals I want to accomplish. Obviously, the biggest goal would to be 25 and healthy again. HA – where is a time machine when you need it? But my most realistic goal is open communication with my family. THAT'S the big loss for us. I'm either feeling ok and doing what i need to do, feeling bad and yelling at everyone but still not asking for help, or just down and out with the door closed and yelling at anyone who dares enter my sacred dark lair. (though, really, can you blame me?) Technically, I've solved my own problems, but in reality it's never that simple now is it?

    I wish I could be as positive as the rest of you guys, but now is just not the right time for me. Hopefully in 6-12 months My title will be something along the lines of how I BEAT the challenge of dealing with chronic migraines (and chronic illness and pain). I'll be happier and so will my family!

  • Kerrie Smyres moderator author
    6 years ago

    I’m sorry you’re going through such a rough time. The emotional weight of chronic illness is massive and too little attention is paid to it. I’m glad you’re scheduled to see a counselor and it’s great that you’re so prepared. There are many helpful techniques for dealing with illness. Best wishes on your journey.

  • Nancy Harris Bonk moderator
    6 years ago

    Hi tucker,

    Being chronically ill for any length of time can knock the wind right out of our sails, so to speak. It’s frustrating, exhausting and downright depressing!

    Seeing a counselor, in my opinion, is a great way to help deal with the issues that arise when living in chronic pain. Good for you!

    Nancy

  • Dee
    6 years ago

    What helped me was when my husband advised me to take charge of my migraine illness. At one point, every time I was hit with a migraine I’d be reduced to tears (and I’m not a person who cries very easily).I decided to manage my migraines as I have my career. I keep a migraine diary with instructions to myself on ways to avoid a migraine. When a new trigger is discovered, I add it in there to my list. My diary has allowed me to stay disciplined about avoiding my triggers and has therefore reduced my migraine frequency. Of course, there are times when triggers are beyond control such as weather or strong smells but the way I see it, those attacks are acceptable if I am sticking to my regimen of avoidance. I don’t feel guilty when I need to recoup from a migraine if I know full well that I am doing everything within my control to avoid it. I also don’t feel guilty due to doing all that I can and living as much as I can on the days that I am migraine-free. I have gone from 15 migraines per month to 3 or maybe 4 per month by making migraine my “career”.I have chosen to allow my migraines to empower me rather than weaken and depress me. I treat the advercity as a challenge. I am a Migraine Manager in my migraine career.

  • Kerrie Smyres moderator author
    6 years ago

    Wow, that’s an impressive reduction. I’m glad you’ve found something so helpful for you. Getting an understanding of one’s triggers can make a huge difference for some migraineurs. Others, unfortunately, can be on top of all the details and still have chronic attacks.

  • AmyBabee
    6 years ago

    Yes Kerrie, I admire the your hope and outlook. Like we all know, the human will to live is stronger than anything. I read in the Bible book of Proverbs .. I paraphrase; that If you are weak in the day of adversity, you are indeeed weak. I dont understand it all but I believe if God does not take away trials/temptation from you, He will surely see you through them. I count my blessings each day and that gets me through the worst of it..I have yet to lose any body parts due to illness, unlike some people with various cancer, alopecia, etc. Hang in there, all. We will yet be victorious, is what I say. Most of us have migraine ONLY and others have migraine WITH other health issues and you wonder how they still wake up daily. I have migraine and HIV+; I work full time and my Dr. wonders WHY I am always smiling with all I have going on. It is only God’s grace- I am healthier than most people. Havent been in emergency room for once in spite of my health issues! I still marvel at that. Thanks for sharing.

  • Kerrie Smyres moderator author
    6 years ago

    Thanks for the kind words. I’m glad you’ve found support that keeps you going.

  • Rene'
    6 years ago

    I feel you. And this is what I say many times a day…….”You are here because here is where you are supposed to be.”

  • Kerrie Smyres moderator author
    6 years ago

    Great mantra. Thanks for sharing!

  • Poll