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Appearances Matter

Migraine has been my companion now for 5 decades with a spotty treatment success history. I have been married for 4 decades and I realize it is no picnic for our partners. I just joined this community because I am at the end of my rope with 15+ migraine days/month despite the best pharmaceuticals. I am rambling because I know I can do more. But I am being thrown off the balance beam by comments from my husband about "how I look." He tells me I look sad. Why don't I cheer up? What is the matter with me? When we "socialize," he says I look like I don't want to be there. If he only knew the duck feet paddling under water keeping me there. Even though I tell him this, he cannot understand. I feel black. The pain of my migraine has left, but it has not left my face. He will wake up and see it and once again tell me I look [insert negative adjective]. I cannot muster the resilience when I come out of these attacks. I feel like a puddle. I want to hide under the bed and cry and never come out. I feel hopeless about this disease and am struggling to accept I will never be free of it. Help...

  1. ts I know exactly how you feel. My experience was very much like yours in having a spouse and family that didn't understand what I was going through. I didn't fault them because they didn't have a comparable experience to relate my migraine attacks to their lives. A huge hurdle of an invisible disease is the stigma we endure based off our outward appearance. I wore a mask more times than I should have, but pushing through was sometimes the only option despite how I felt inside. Things changed for me when my husband began having more frequent 'bad headaches' as he called them. I suspected they were migraine attacks, and I used my knowledge and experience to advocate for him. He was diagnosed with chronic, intractable migraine and new daily persistent headache(NDPH). His attacks were brutal and unrelenting for weeks. Long story, short, through all this he understood what type of pervasive disease migraine was. He apologized to me repeatedly as he felt the weight of the words that came out of his mouth. He, too, was experiencing similar stigma from the people he worked with and family. It took a long time to educate those closest to us about what we were experiencing, but fortunately our efforts paid off. I know it feels like your prolonged attacks will never end, but don't lose hope. There is a light at the end of the tunnel for all of us. Finding the right key to unlock a way to effectively manage our attacks is a process and takes time. There will always be times when we don our masks, but that will be our choice. People living with migraine disease are the most tough and resilient people I have ever come to know. Here you will find the support and understanding to help you through. Let us know where you need support and direction so that we may help clear the path for you. Warmly, Cheryl team

    1. thank you for posting this deep conversation. I can relate to this. I used to be married and it was hard. I believe that they truly do not get it. Some do not want to understand either. I wanted to share this link on emotional support: I do believe that we need someone we can talk to be it a family member, clergy, or a mental health profession. This group is great, but we may need more. Sending you hugs and support from the community. (Tonya, contributor).

      1. Hi - My dear friend, your words resonate deeply with many in our community. The weight of migraine disease can feel overwhelmingly heavy, leaving us longing to escape its grip. The sense of isolation and frustration, when relief seems out of reach, is something many of us have experienced firsthand.

        Navigating through challenges can be especially difficult when those around us may not grasp the hidden battles we're facing. Your comparison of the duck feet paddling underwater beautifully illustrates the unseen effort required to maintain composure while grappling with migraines. Your emotions are valid. It's important to know you deserve to be acknowledged with empathy and understanding.

        Please know that you're not alone in this struggle. It's okay to feel overwhelmed, and it's okay to seek help and support. You're incredibly strong for facing this battle every day. We are here to listen and offer whatever support we can. You deserve relief and comfort. Please know we are by your side as you find ways to cope and navigate through this difficult journey.

        I feel self-care is the beginning ... helping yourself first and foremost. This article may help

        I know you don't feel much like taking care of yourself right now - start small. Do something to make you happy, and then increase it daily or weekly. Self-care is essential to maintaining well-being as you travel this migraine journey.

        Thoughtfully, Rebecca (team member)

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