Chronic Migraine, Coping

When Migraine Grief Refuses to Be Ignored

Migraine grief: Chronic Migraine keeps calling Grief and inviting it over to visit.Grief barged in at 3:18 a.m. It wasn’t too surprising—I’ve been slamming the door in its face for a week.

Facebook shows me Spanish tortilla with red peppers and peas. I want to read how the Cook’s Illustrated staff iterated to create the perfect dish, but know it will fill me with unbearable longing. I do not click through. Slam!

A character in a book mentions traveling to Ireland. Unbidden images of rolling green fields and castles fill my thoughts. Slam! The door is closed before I even realized it had opened.

But Grief keeps pushing its way in. Australia, New Zealand, Patagonia, Iceland—all the places I long to go, all the places I’ve been trying to avoid thinking of—scroll through my mind. Slam!

I throw my back against the door to prevent it from opening again.

Still, scones, chocolate chip cookies, and multigrain bread work their way into my thoughts. Slam! I cannot staunch these visions quickly enough. Not only can I not eat these foods, I cannot bear to bake them. The double loss threatens to invite Grief to become my roommate.

My efforts aren’t enough, so I erect a more permanent barricade in front of the door.

My therapist asks me to rate how severely I am grieving on a scale of 0-10. “Seven, when I let it in,” I say. After some back and forth, she tells me I am responding to my emotions skillfully. That to see Grief pounding on the door and choose to leave it on the doorstep because I can’t deal with the imposition is a healthy reaction.

The barricade works. What a relief.

Grief slips in through the forgotten crack at the bottom of the door.

Attempting to add pomegranate to my foods-I-can-eat list, I am rewarded with six hours of a migraine attack. I go grocery shopping when the attack lets up. Grief climbs into the cart and fastens the seat belt.

I try to push Grief aside as I fill the cart with the foods I can eat: romaine lettuce, butter lettuce, asparagus, red peppers, green peppers, watermelon, chicken breast, cream, butter. That’s it. Grief laughs. It reminds me over and over how fucking unfair it is that eating is my migraine trigger. It tells me I will never again eat peaches without paying in pain. It says that all my work to determine my triggers won’t actually result in fewer migraine attacks.

Grief hangs out for several hours. I feel boring and needy as I register the same old complaints with Hart. I have nothing new to tell him on this front. Grief keeps coming back for the same reasons it did last month, last year, last decade. No matter how much great work I do in therapy, Chronic Migraine keeps calling Grief and inviting it over.

Talking to Hart makes me feel better. I choose to change the subject and toss Grief to the curb again. Slam! I put the barricade back up and shove a towel in the crack under the door.

I find Grief lying in bed beside me when I roll over at 3:18 a.m. I’m too tired to try to kick it out. We talk for a couple hours, then Grief lets me go back to sleep. I suspect the reprieve will be short.

I awake in the morning to see the door hanging by its hinges. I can no longer deny Grief entry into my home. It is adamant that I entertain it right this second.

Grief and I have spent so much time together that I know exactly what to expect. Grief will detail everything I have lost to migraine, it will predict a future based on past scenarios, it will remind me that my actions have been futile thus far. I will cry until I am spent. Grief will ignore my exhaustion and overstay its welcome. (To do otherwise would be impossible; we both know it was never welcome.)

After Grief has its say and I regain some strength, I will tell it to leave. I will have to repeat myself multiple times before Grief finally complies. I will rehang the door and shut it gently. I will sigh in exhaustion and relief, hoping to have at least a few days of peace before Chronic Migraine summons Grief to my door again.

34 thoughts on “When Migraine Grief Refuses to Be Ignored”

  1. This is so well written. I hate grief. I cant shake the migraine. Probably the best summary of grief I have read.

  2. Thank you for this wonderful piece. At 34, having suffered from chronic migraine since 10, I am just now learning about the grief and anxiety it has caused me (things I thought were separate from migraine!) I found a wonderful therapist who asked me the right questions and said “you need to face your anger and sadness towards migraine” and I started art therapy. This is a wonderful written piece to relate to. Thanks again.

    1. Thanks for your kind words, Dana. It took me a long time to see how much grief migraine has caused in my life, too. The work I’ve done in therapy has been hard, but worth all the effort. I’m so glad you have a wonderful therapist. I hope art therapy is helpful.

      Take care,

  3. “I feel boring and needy”

    Yes. I feel this. I am not good company a lot of the time. I grieve for my old life everyday.

    Thanks for this piece.

  4. Kerrie, just want to say that I am so impressed with your ability to post and share with others on a regular basis despite your migraine situation. You are giving a valuable gift to so many. I am sure that your blog is a life line to many people. I hope that you can recognize the value you are providing to so many. And although you don’t travel some where else to “work” you still are working. You are contributing so much. Although technically I work, the work you do is so much more important. Your presence is critical. I hope that you are proud of what you do.

  5. What a great way to explain this insane disease. It sucks. I only wish others could understand, even a little.

  6. My migraines are random and after 30 years i still do not know the triggers. They last about 2-3 days. Of severe unfunctionable pain. All symptons diffrent. Mostly i vomit all the time with one. If i can catch one coming on i can control it and get it to go away with supplements heat and ice. Ugh. Thank you for this . great read

  7. I feel on edge at times, on the verge of crying and now I realize it’s my pre-migraine phase. Grief for the things I’ve missed and feel I cannot control. Thanks for a beautifully written article.

  8. I have suffered with migraines since I was 13, I am now 36. I deal with them for days at a time, sometimes months at a time. Absolutely nothing has helped so far. I feel so lost and alone, people do not understand pain that isn’t visible to them.

  9. Beautifully written. I think about you a lot. I agree with your therapist: you are a master at emotional process.

  10. Kerrie, your post describes this grief SO well. And I, too, feel that it is not often discussed, considering it’s an inevitable daily part of our lives with migraine.

    I sometimes grieve a situation right as I am in it. For example: a while back I went swimming in a beautiful, secluded river, surrounded by gorgeous trees. The water was a perfectly comfortable temperature and so was the day. Everything was perfect. But I turned my face from my friend and started quietly crying. – It had been three years since I had been in the water, in fact I had barely even been outside. I had no idea when I would be able to do this again, and my head was STILL killing me, just barely tolerable enough with drugs for this outing. I looked at the trees and i MISSED THEM EVEN THOUGH THEY WERE RIGHT THERE. What the heck? They were like best friends who were just going to leave me again in an hour for god-only-knew how long. The water, so lovely, was breaking my heart. I was living inside a moment of grief. It was new and overwhelming.

    Since that day, I’ve been less overwhelmed – well, less surprised – when these things happen. That was 13 years ago. It happens all the time – just as you described. Sometimes I can brush by it, and sometimes I have to give in and have a long cry to give it the recognition it deserves in my soul and my ongoing healing.

    Your blog is always helpful to me, but this is one of your most supportive entries. Your description of grief as an ONGOING event that is part of chronic migraine, as opposed to something we can deal with and ‘get over’, is so normalizing for me. I always think I should have ‘found a way to cope with this thing by now’. – How ridiculous when it continues to take&take&take from me every day. Of course the grief will be part of my life. Knowing this is normal tells me I need to acknowledge it and take care of myself when it comes up.
    Thank you so much for this perspective!

    1. Thanks, Kate. Your experience in the river is so sad. I can’t actually write my thoughts about it without breaking down, which I can’t do right now. You make a great point about the ongoing nature of grief. Even with death, society tends to paint grief as something you do, then you get over it and move on. That’s not how it works, of course—I’ll never be completely over my dad’s death, for example. In many cases grief does become less acute and less painful, but chronic illness presents ongoing loss. Like you say, it just keeps taking. Grief from chronic illness is a wound that never heals and it’s always open for further injury. It’s intensity waxes and wanes, but it’s always there.

      Take care,

  11. I know that the content is the leading lady of this piece but I just wanted to say that it could stand as a beautiful piece of writing all on its own. Well done.

  12. Really good post. Helped me remember I’m not alone and others feel the same way.
    Unrelated but important, a naturopathic dr i went to recommended an app that removes the blue from your computer screen. Similar to your Theraspecs. It’s called f.lux. I just installed it today so I don’t know if it will have an effect but us migrainuers will try anything.

    1. Thanks, Liza. How are you liking f.lux? I know a lot of people who love it. I think I’m the only person with migraine in the world who doesn’t like it!

      Take care,

  13. This is my feeling to a “T”. My whole life given over to chronic migraine. All my conversations. All my thoughts. All my time. I hear the concern in my friend’s voices when they ask “how are you feeling today?” . I’m grateful that they love me and care about my health, but I feel like I will explode if I hear that question one more time. I grieve my former life, my independence, my joy. I feel that this disease has robbed me of everything that is essential for a full and happy life.

    1. Hi Tiffanie,

      Thanks for your sharing your story. I’m also feeling weighed down by how much attention migraine demands and the role it plays in my relationships. I’ve requested that loved ones ask “How’s your day?” rather than how I’m feeling. Then it gives me the choice of whether I talk about migraine or not. It’s a small thing, but has made a big difference.

      Take care,

  14. Thanks so much. This was a great post and really resonated with me. Especially because you listed all the places I long to visit and I can’t bear the thought of a future without travel.

    1. Thanks for the support, Justine. I’ve recently become obsessed with trying to figure out how to still travel. I’m working on a post about it to share my ideas and solicit input from readers. I hope to have it up within the next couple weeks and that it can help us both.

      Take care,

  15. I feel exactly the same way all the time. But crying also makes my head hurt. So giving in is also not good. I get a release from the sadness but a headache to go with it. God I hate these things. They really do take over a life.

  16. I’m Anna’s mum. I do the same thing, because I can’t bear to think about what she’s lost, and what she has to live with. I crack the door a little bit and I see through to what I can’t fix and it hurts so much, and then I feel so guilty when I push the door shut. I think we all need help with this. Thanks for sharing, made me feel awful, but thanks anyway. I have such admiration for you all.

    1. Susan, I agree that we all need help with this. It’s one of my biggest frustrations with chronic illness treatment—we’re given diagnoses and medications, but no guidance on how to deal with the life-altering consequences.

      Take care,

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