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Holding on to Hope

In December 2003, I thought I’d tried every available migraine treatment except for the occipital nerve stimulator I was to have implanted at the end of the month. I thought the stimulator would be The Answer and, if it didn’t work, I was out of luck. You can imagine my devastation upon discovering that my migraines were unchanged following the surgery.

Devastation actually seems like too mild of a word for what I felt. I was plunged into the deepest depression I’d ever had. I wrapped myself up in sadness, hopelessness and despair, convinced I would have severely debilitating migraine attacks every day for the rest of my life.

After a year of that, I knew I needed to find another way to live if I expected to survive. I started with a trip to a psychiatrist and prescriptions for Cymbalta and Wellbutrin. Then I began scouring books, searching for a way to build a life amidst severe pain, dizziness, exhaustion, brain fog and a large handful of other symptoms.

“The Anatomy of Hope,” by Dr. Jerome Groopman, was the first glimpse into an understanding of hope that would eventually change my approach to illness and, as melodramatic as this sounds, my life. Dr. Groopman writes,

“Many of us confuse hope with optimism, a prevailing attitude that ‘things turn out for the best.’ But hope differs from optimism. Hope does not arise from being told to ‘think positively,’ or from hearing an overly rosy forecast. Hope, unlike optimism, is rooted in unalloyed reality….

“Hope is the elevating feeling we experience when we see – in the mind’s eye – a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion.

“Clear-eyed, hope gives us the courage to confront our circumstances and the capacity to surmount them.”

These words punched me in the stomach. Could my way of coping with illness – the positive attitude I was often praised for – be a form of delusion that was causing more harm than good?

Before reading “The Anatomy of Hope,” my version of hope was believing I’d find a miracle treatment. I’d throw myself – and my emotions – behind whatever new treatment was on offer, sure it would make the migraines stop. Time and again, this led to crushing disappointment. With Dr. Groopman’s guidance, I redefined hope for myself as believing that it is possible to live a rich, fulilling life even with debilitating chronic illness and that I could endure whatever came my way.

This redefinition didn’t change the frequency or severity of my migraine attacks, but it began to change the way I related to chronic illness. I didn’t stop seeking treatment, but I did stop searching desperately for a magic cure. I stopped breaking my own heart by convincing myself every treatment would be the one to save me. I started to learn how to live with chronic migraine rather than believe my only chance at enjoying life was to be migraine-free.

Of course I’d love to never have a migraine again, but that’s not my reality. I keep working toward that goal, while also trying to live well whatever my health brings each day. I still have days that are filled with tears and anger, but I also have joy.

The irony? Since I stopped using all my physical and emotional energy hating and fighting against migraine, I’ve had enough to channel into finally finding treatments that provide some relief.

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

  • Sonya
    5 years ago

    I ordered a book months ago and have just now got around to starting it. Its; Mayo Clinic Guide to Pain Relief Second Edition-“How to manage, reduce and control chronic pain” I’m not quite half way through but so far the best part is graphs and explanations on a person’s “Behavioral Cycle” when pain is in control and the “Emotional Cycle” This really opened my eyes to some of my reactions to 32 years of migraine pain. After that it shows the “Family Behavioral Cycle” and Emotional Cycle” when pain is in control. It made me realize that my migraines may have an even bigger impact on my husband than I thought. I’m going to have him read those pages. It is a large book but easy to get through, fairly large type. Its $30. at Mayoclinic.com (at least that’s what the price was when I purchased it.)I’m not much of a reader but I am going to try to read the book you suggested after I get through this one. God bless you and all the writers at Migraine.com for giving us great articles to make to make it through, one day at a time.

  • Sonya
    5 years ago

    I meant to say; great articles to help us make it through, one day at a time.

  • Shelly
    5 years ago

    Thank you for this article. It is making me feel less alone. I have been suffering with migraines for 27 years since my first pregnancy. I am now 53. Just this past month, for the first time, I have been dealing off and on with a migraine for almost a month. I just can’t break this one. I feel like my doctor is getting angry at me, like I am not trying. The longest I have ever had a migraine for is 5, 6 days. Your article is making me realize there is no miracle cure (I have certainly tried almost all), menopause probably won’t get rid of the migraines,etc. I am not happily accepting this truth yet or fully allowing myself to believe this right now because it’s too upsetting. Maybe when I feel better and I have the energy to buy and read the book you recommend, I will be able to get some perspective back. Thank you.

  • migrainestl
    5 years ago

    This is how I have tried to live every day of my life, regardless of the circumstances. About 5 years ago, when I was virtually migraine-free, I was living overseas with a boyfriend. He ended the relationship and I decided to move back to the USA, utterly heartbroken & lost. I was 30, w/o a job & had to live w/ my parents for a short time. Despite my situation, I continued to believe that everything would work itself out & this was the best thing for me. I had a grasp of reality, but held onto hope. Fast forward 5 years, I’m married w/ a baby and living with chronic migraine. That eyes-wide-open-hopefullness continues to sustain me. Despite my illness, I love my life….of course I hope for a cure, but I’m thankful for the things I DO have and choose happiness over despair.

  • Angie
    5 years ago

    I am so thankful you shared this. I had a new treatment done last month. Leading up to the appointment those around would say things like “I hope this works for you.”, “I hope this cures you.”, “I hope this stops the migraines.” When I would respond with something like “There is no cure. I hope it helps, we will just need to wait and see.” I got responses implying I did not it to work because I did not seem to have a positive enough attitude about it. I’ve been trying and searching for the next new thing for over 17 years and I will continue to do look for treatments that will help to minimize the effects of migraine disease on my life and on those I love. But, I have learned that there is no cure. And like you, it takes to much of an emotional toll on me to get my heart set on the next treatment being the one only to deal with crash when it does not work or does not work as well as expected. I still have hope but it based in reality. Why is that perceived as wanting to be in chronic pain from migraines?

  • cjs
    5 years ago

    I ordered “How To Be Sick” by Toni Bernhard. If you have recommendations of other books that you have found helpful I would be interested. Thanks.
    Cessa

  • cjs
    5 years ago

    It is just crazy that you posted this today! I have been fighting this madness for 9 years now, 6 of them in a daily chronic state. I don’t use the word “fighting” loosely either. I went at it with full force (well, as much force as I had left after trying to maintain my role of Mother and Wife). I took every suggestion and prescription and played along trying to end the pain and disruption of my world. I had put my life on hold waiting for the “cure” with plans to resume where I left off after finding it. I laugh now when people ask if “they” have figured out what’s wrong with me yet. Yes, they have and no, there is no cure, there is barely any treatment. I have been miserable since realizing that this is likely the way life is going to be for me. I decided that I just CANNOT accept it!
    Over the past two weeks I have felt a shift. I realize what I cannot do is continue to live life miserably! I have begun to see that accepting my situation is the key to unlocking the misery…I just don’t know how to do it.
    I ordered a book about living with chronic pain and before I could jump in and begin to change my way of thinking/reacting/feeling about my life, I came across your post. Serendipity? I think so. I’m grateful for your words and hope to be where you are eventually. Blessings.

  • Kerrie Smyres moderator author
    5 years ago

    I’m so glad that this reached you at the right time! As cliched as this sounds, recognizing that you need to make the change is the biggest, most important step. It’s taken time for me to get where I am now, but there have been many incremental shifts along the way. Sometimes it feels like I make progress every day, other times it feels like I’m stuck in the mud.

    Which book did you order? There are some great ones out there.

    Best of luck on your path to acceptance. Let me know if I can help.

    Kerrie

  • patti2003
    5 years ago

    Yes, I can relate. Hope has come to mean something new to me as well and I’m becoming okay with that, too. I’ve tried lots of treatments and thought I’d be a lot more “well” by now but I’ve finally come to accept that I’m going to be living with chronic migraines and need to take my life off hold and just live the best I can. The drugs help but only enough to keep me out of despair (most days) and each time I spend a fortune on something new it fails to do anything new except make someone else a little richer. I’ve decided to keep the money and save my sanity looking for the holy grail. I’ve come to accept that most doctors aren’t going to get it so I have to, that taking care of myself is in my purview, and that I am going to be okay, even when it doesn’t feel like it. Life sometimes throws rocks in your way and you have to find the route around. And like you, once you become okay with this, you relax a little and can figure out what you need to do.

  • Kerrie Smyres moderator author
    5 years ago

    “You relax a little and can figure out what you need to do” — what a great way to put it! Best wishes as you figure out what works for you.

    Take care,
    Kerrie

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