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Do you ever feel misunderstood?

Hey Everyone,

Since my migraines have come back, I've been feeling a little alone. My mom and I talk, and she says she understands and I told her I'm not trying to complain about my migraines, I just want to desperately be heard. My mom's wonderful, but I just feel like people who don't get migraines simply can't understand just how awful they truly are. I feel like they are hard for me to accept as well. It's really hard for me to accept and understand how I can have a neurological disease or disorder that other people can't see

  1. Yes, I do too. My husband is wonderful, and has experienced terrible pain, but his has been visible - broken leg, operations. So he has had signs to the world of his pain. A big heavy cast. Scars. Pain in your brain is only visible by the effect it has on you - the vomiting, writhing in pain etc. People have to take it on trust to a certain extent.

    Is this what you mean? You sound like YOU'RE not even sure if you believe it! I've felt the same. Been through 3 days of unbelievable suffering, and then wondered a couple days later if it could have been as bad as I thought it was...how did I live through THAT? And then it happens again.

    If you post on your Facebook page that you have migraines, I wonder if it'll turn out that several people you know also have them, but never said? I did this, and found a lot of comfort.

    1. Hi SuzieR,

      Yeah that's how I feel. My mom and I were talking earlier, this is how our conversation went:

      My mom: "Now do you know where they come from?"
      Me: "My .?"
      My mom: "Yup"
      Me: "That doesn't change how bad they are"
      My mom:"Oh of course not. But at least they're not as bad as they were last year. Be optimistic".

      I know she meant well, but really? 😢 Migraines and optimistic can't be used in the same sentence. First of all, migraines have no cure at this time in medicine. Second of all, migraines change.

      This is exactly why I feel misunderstood 🙁

      1. It's really annoying when people do that - they're trying to understand, and get you to be positive, but it feels really belittling. Last week my aunt, who I know loves me and is trying to be supportive, said that when she was younger and had a period of suffering migraines, she could "Think positively and stop them"!!! My g-d!

        I have to keep telling myself that it's cos she loves me and can't stand seeing me suffer. It comes from a place of love...

        But heck, the woman had breast cancer and went through that immensely stressful 5 years of praying to achieve full remission, without the cancer spreading first. I guess thinking positive is a necessity if you have that hanging over you? I guess we have to try too. What's the alternative? Total and utter misery and anxiety. Yeah, I'm not liking it much.

        And there is something promising in the pipeline for us - not a cure, but a kind of preventative treatment using monoclonal antibodies to target the weird things that happen in our brains that cause migraines. There are at least 4 drug companies working on it and we could have it in 3-5 years. So let's have some hope. People will keep on misunderstanding us...

        1. Hi SusieR,

          I'm sorry you're aunt said that to you. I can understand that they come from a place of love, but I agree with you 100%, they can be belittling even if they don't mean to be. And I'm so sorry about your aunt having breast cancer. I've prayed too, and I love to read The Bible. But I believe God gives His biggest battles to His strongest soldiers. I feel like the only way I can honestly get through my migraines is trusting that God knows what He's doing, and that He will help me through them. I don't want my family thinking I like to suffer, but it's not like I asked to have this condition. No one in their right mind would ever want to have migraines.

          Thanks,
          kstout135

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