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Dear healthy loved one

Dear healthy loved one

The migraineur in your life wants you to know:

  • Migraine is a real disease.
  • There is no test for Migraine.
  • There is no known cause.
  • There is no cure.
  • It’s not just a headache.
  • It’s not a mental illness.
  • It is possible to have a migraine attack every day.
  • Bright lights, loud noises, strong smells, certain foods…they really do trigger attacks.
  • It can take days to recover from a single attack, even once the pain is gone.
  • It isn’t safe to drive during a migraine attack.
  • All those meds are not the problem.
  • Meds don’t always work.
  • Most doctors are not trained to treat Migraine.
  • Emergency rooms are not always kind to Migraine patients.
  • There’s a shortage of qualified doctors.
  • There will be months, even years of trial and error.

I am sure this all seems unbelievable. What you observe appears confusing at best and frustrating in your weaker moments. I understand. I also love a few people with migraine. Despite living with this disease for over 40 years, I still have moments when I doubt my loved one’s truthfulness. Sometimes I wonder if they “did something” to trigger an attack. I get frustrated when it appears they are not taking their medicine as prescribed. Nothing irritates me more than to hear one of them complain about the pain and then tell me they haven’t done anything to try to abort the attack.

As a wife and mother to migraineurs…

These very behaviors drive me nuts. After all, haven’t they heard my lecture about treating attacks early and aggressively? Don’t they remember the lessons on sleep hygiene, trigger avoidance, keeping a migraine journal, taking medicine as prescribed, and so much more? I get frustrated because they have the opportunity to learn from an advocate any time, day or night. They are the only ones who get to wake me in the middle of the night because of a migraine attack. Not everyone gets that chance. Honestly, my irritation is more about my own ego than about their journey with migraine.

As a migraineur…

I completely understand why someone would choose to risk an attack by intentional exposure to a trigger. Forgetting to take medicine or delaying treatment also makes sense to me. It’s never about not wanting to get better.  We get tired of always watching for triggers and setting alarms to take medicine two, sometimes three or four, times a day. It’s exhausting to manage this illness and it’s only made worse knowing that most people won’t believe that we are really sick. Some might understand and still not care. Sometimes we just want to live like a normal, healthy person for just a while.  We know it’s an illusion, but we just need a break from being sick. So we pretend to be healthy to distract us from the never-ending hypervigilance of an incurable disease with no known cause.

Yes, we do put on a show.

At some point we may even try to push through the pain in order to participate in an important social event. Try as we might, we just can’t put on that show 24/7. Sooner or later we’re going to break. Often that is at home with our loved ones. If we can’t fall apart with you, then what other option do we have? We know that we are unreliable. This disease has made us that way.  We also know that you are irritated, annoyed, and frustrated. We take it all very personally. It’s okay to feel that way – we certainly do. We just want to know that you are still on our team – that you will go to bat for us when we need it most.

We need you.

We need you to learn about this disease. Although we didn’t ask for this, it has taken control of our lives. It would just be so much easier if just one person really understood what we go through.  We really want that someone to be you.  Living with migraine is so lonely. Having you makes this life brighter and more hopeful. You matter to us, even when it seems like we don’t care about anyone. Please take the time to learn, to understand, and to accept migraine. It will mean the world to us if you do.

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

  • Myra
    3 years ago

    Sometimes we just need someone to hold us.

  • DonnaFA moderator
    3 years ago

    Thanks for sharing your thoughts, Myra, we’re glad you’re part of this amazing community. Please know that you’re not alone, and we’re always here to listen on those days when a virtual hug will help. -Warmly, Donna (Migraine.com team)

  • Liz Flynn
    3 years ago

    No one wants to know after a while. People are busy and or distracted and even some of the nicest ones become exhausted by and discounting about migraine. I’m not proud of it but there are times when the dark thought of “I wish s/he’d get migraines for a while, a string of them for a good long while because one just won’t be enough for them to understand the full scope of the misery”. I’d never really want that, it’s just a dark fantasy that helps me to resolve the stress of dealing with the important people in my life who are exhausted and disappointed by me having migraines. I understand why they’d feel that way but sad that they’ve walled me iff in a way. There is an article on this site about the sense of having the dark thought of wishing a migraine on someone so that they’d see but not truly wanting it. Remember pregnancy empathy suits? Imagine if doubters had to wear migraine empathy suits.

  • DonnaFA moderator
    3 years ago

    Hi, Liz! I hear you. I’ve had those thoughts myself. I think we try hard not to, but it bubbles up when we feel marginalized by the people we trust to take care of us in some way. Funnily enough, there is a VR headset, and also an app, that simulate the migraine experience of visual auras. It’s a small part of what we go through, but the reactions to the experience are really interesting.

    Thanks for sharing your thoughts. We’re glad you’re here! -All Best, Donna (Migraine.com team)

  • Michelle
    3 years ago

    Thank you for this wonderful article. I sent it to all my family members. And I asked them to please read it. I so hope they do. A few really understand, but there are a couple that I think are still skeptical and just don’t get it. So hopefully this article might clarify how one day I’m fine and the next I’m not. Or even hour to hour. And that I’m not the only one and I’m not making this up or exaggerating. So again thank you so very much.

  • Piglet
    4 years ago

    This made me feel a little weepy. This is a sorrow filled way to live. I was lucky in that I did not start having migraines until about age 40, 16 years ago. They started out as rare but now I have them more days than not. I was very outgoing before the migraines became chronic but now wish I could stay home most of the time. Physical activity is one of my triggers and between a sedentary life and job and meds I have put on so much weight I am embarrased. Especially the amitriptyline, although I am a bit less weepy on that. I try to go out with my husband a few times a week whether I feel up to it or not. Invariably the subject turns to migraines and my friends and his have given me so much unsolicited advice that they don’t realize that they are repeating themselves. (yes, I’ve had my mercury fillings removed and done yoga breathwork … and just about everthing else you can name.). I just can’t listen to it anymore. My brain and a computer are my only work tools and more often than not lately my brain has let me down more often than my ancient laptop. My husband is a good person but not a nurturer and although his rational self knows on some level that I am ill, I think he might regret his choice and he is not much help. He really doesn’t understand that even if I don’t have a migraine I need time to recover and store up energy for the next one. I am going to send him your article but he probably will not read it. Sometimes I wish for a nice medical spa where migraineurs could go to recover or stay as long as they need with no stigma or worries. Where someone quiet could bring us ice and heat and food and drink but only if we want it. Actually I have to go back to work. Still recovering from yesterday’s monster migraine. It was a nice daydream though.

  • LAnnSmith
    4 years ago

    Excellent. Thank you.

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