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Support system or…?

We’ve all had it. That experience that’s all too familiar, yet still a slap in the face (as it is every time it happens): someone who assures you, until short-of-breath, that they are your biggest support, letting you know that your migraines “aren’t real”.

They’ve “had one before, [they] even had to go to the ER, so you can’t be in *that* much pain”.

That soul-crushing feeling of…… Wow. They really DID think I was faking this whole time. I really AM a burden to my family. I can’t believe I actually thought I was safe this time.

How do you handle this, when you physically cannot even clean your room more than 2 days a week and the place you JUST MOVED INTO keeps wondering when you’re going to “get over it” and get a job? I just. I don’t understand. We literally talked about why we were moving. We talked about what would need to be done to accommodate for my migraines, and they agreed. Yet none of those things are being done.

I feel extremely tired and unsupported. Weighed down. Like a child. My head and body hurt so bad right now and I just want to curl up in a dark bathroom so I can do what needs to be done easily but I don’t have that luxury anymore. This house is too bright, every room hurts. I’m just sitting here whining on the internet but I don’t know what else to do…


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  • parmes author
    1 year ago

    Thank you all so much for reaching back, supporting me. It means the world. The pain is unending but having people that understand really helps.

    I decided that even with my high pain tolerance (thanks for the reminder @debbieleq, I need to remember that maybe they really aren’t seeing it) I need to show my family what’s happening. Stop holding back tears just because it’s what I’m used to. Let myself walk slowly, or not at all, if needed. Let myself be in pain so that I can get back up fully again.

    Thank you.

  • Holly Baddour moderator
    1 year ago

    @parmes – What an incredibly disappointing and difficult situation it sounds like you’ve encountered. I’m so glad you took the time to open up and share your story with the rest of us. As @debbieleq said, you are not alone, our community is alive with people who are navigating similar challenges at home and at work and feeling very alone in so doing. I’m so glad that you’ve had such compassionate responses by our members here and I will echo their sentiments and add that while migraines bring us to our knees in pain, they also make us dig so deep to find the resilience we need to find our footing over and over again. The migraineurs I’ve met here and in my life are truly the strongest people I know.

    It’s true that few others truly understand what we’re up against and it can be exhausting to feel like we’re navigating this on our own. All the more important to reach out for support (like you have here). I’ve found that it can help to send articles from this site to friends and families who don’t seem to understand as a way to help educate them and raise their awareness about the disease. Doing so can increase their understanding that this is not something that is just a headache. And it’s not something that only you have so severely. Hopefully if they read a story or an article they may come to see how serious and comprehensive of a disease this really is.

    Outside of that, finding and connected with “your people” can help to shore you up. So, whether that be here online, or in-person or online support groups on the topic, or counseling- it might be time to strengthen your support network to help you through such a significant time of transition while you’re also up against the significant pain of migraine.

    Please stay in touch with us about how you’re doing and what’s working and what’s not. We’re here and thinking of you.

  • debbieleq
    1 year ago

    First of all I want to say that you are not alone. Every member on here is sending you emotional support (especially me). I know exactly how you feel. My pain tolerance is high and that makes it harder for my family to accept that my pain is affecting me as much as it did. I have been in labor for days and not been so whiny :). But the reality is that when the 3 concussions I had triggered my episodic migraines to become chronic I wasn’t the same person. I went from the person everyone depended on to the person nobody even trusts with tasks. The important thing to remember though is we did not choose this. We did not wake up one day and say “Hey you know what sounds good right now? Migraines”. So the blame cannot be taken as an additional burden on us. There is no use carrying around the guilt of it. Just be hopeful. I know there are times when that is tough. Last night I had the urge to hurt myself again to block the pain and disorientation. Trust me when I tell you it gets easier. I will be praying for you. Also from my own experience I can tell you a lot of the negativity they are speaking is more of their frustration they cannot help you then they blame you. It is a reflection of themselves.

  • tiggmom1
    1 year ago

    I’m so sorry that you’re in this cycle. I don’t have any answers but I’m sending you hope that your family/support system will finally “get it” and actually be helpful and compassionate. Please hang in there <3

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