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What on earth were you thinking?!

As Migraineurs, it is tempting to give in and give up to suffering. Pain is inevitable with Migraine, but suffering does not have to be.

It is easy to become selfish and self-serving. Doing so is a normal phase of living with a chronic illness or with chronic pain. The survival instinct mode kicks in, and away we go.

Pain makes us selfish — not in an intentionally bad way. The pain takes away our ability to see what others are experiencing as they watch us in pain. Once we’re in this rocky place, it’s hard to step backward without experiencing bias, and imagine what our family, friends and loved ones are thinking when they look at us. Yet it is vitally important that we put ourselves in the shoes of those we care about. How can we expect them to take the time to understand us if we don’t stop to understand their point of view??

I am not only speaking from the perspective of a Migraineur, but also from the caregiver’s perspective. It is personal to me, so may not speak to everyone. Yet, I’d like to talk about it with hope that the light bulb of understanding will shine a little brighter as a result of sharing…

As the mom of a Migraineur who was chronic long before I was chronic — I remember going through all kinds of emotions. Helplessness, anger, despair, depression, more anger, frustration, sadness. If you look at this word cloud, you’ll find many of the emotions I had as a caregiver are the same ones that you and I as Migraineurs stated when asked to finish this sentence with a word: “Migraine makes me feel…”

As a caregiver, we know just exactly how helpless we are against Migraine. For some, this feeling of helplessness begets compassion and empathy and sympathy and hope. For others, helplessness makes them realize that you have shown them they are weak. Part of who they are — their comfort zone – is hiding behind facades and who they want to appear to be. They don’t want anyone to see a weakness. A strong façade is much less trouble, much less messy than a façade with a hole.

Something they can’t see, or feel is robbing them of the person they love. This invisible “thing” means that they make plans and get excited for a visit that never happens. They labor over a meal, only to find that after all their trouble, you can’t eat it, and you are upset by this even though they tried so very hard to do it right. They count on you to do your part in the relationship – be that a visit, or washing the dishes and cleaning the kitchen – yet at the last moment they are abandoned.

They. Are. Abandoned.

They too are being left alone because of Migraine disease — something they can’t see or touch or imagine.

They didn’t bargain for this. Didn’t plan for it. Don’t want it. This is NOT how their lives were supposed to go. Since when was everything supposed to revolve around you?

They understand how we have to give up our dreams — we’re the patients. But why should they have to give up their dreams because of our Migraines? It’s not fair. Not even close to fair.

They’re exhausted too. They’re tired of walking on eggshells. Tired of constantly having to put Migraine in the scenario of their lives. Tired of Migraine and you always coming first. Taking priority. They need someone or something to be mad at because of the frustration, but you are the only living example of Migraine they have.

When they ask in concern for you, they are told “the doctors can’t find anything wrong” and they simply don’t know what to make of it. They’re confused. The doctors found nothing. That must mean there’s nothing wrong. How can something that disabling possibly not be found on any test?

They imagine a Migraine is like their last headache because they have nothing else to compare it to. They assume you’re either making it up — after all, they’re not disabled by their headaches — or they assume you’re a hypochondriac and it’s a psychological issue. What else could it be? It’s invisible! It must be mental or emotional, otherwise the doctors would find it.

They don’t know that it’s the doctors who are as yet unable to figure out a way to test FOR Migraine instead of ruling everything else out.

I encourage Migraineurs to find a moment when they’re not Migraining – some quiet time in a quiet place — to talk to those you care about. Without getting upset and without taking anything they say personally (it’s Migraine they hate anyway, not you), encourage them to open up and talk to you about what they’re feeling. Let them know you want to understand. Ask them questions…

  • When I’m Migraining, what emotions do you have?
  • When I’m not Migraining, what do you feel?
  • What do you think I’m feeling and thinking?
  • What is the worst thing you ever wanted to say to me about my Migraines?
  • What do you wish you could do to help me?
  • What do you wish I could do to help you?
  • What can I do or say to you when you’re feeling (emotion) so you know how much I care about you?
  • What do you wish you knew about Migraine?

Use questions to show how much they mean to you. Use questions to illustrate how much you care, but be careful not to take personally anything they might say. Don’t make the mistake of taking personally what is really directed at Migraine. If you can, use it as a chance to educate them. Education and information = our sword and shield…

Remember, the enemy is Migraine.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


    8 years ago

    Having that selfishness I think is also a burden. I remember how I recognized that burden a couple of years into my chronic pain, and I went searching for volunteer work. It was like the selfishness, though unintentional, was robbing me of a part of myself that I did not want to let go of. The volunteerism ultimately led me to work with refugees at the UN. Its interesting to think where the pain experience can take us…

  • Staci Gardner Carey
    8 years ago

    This is awesome…. So important to remember to those people who also suffer from these awful beasts.

  • Pamela Curtis
    8 years ago

    Brilliant! I think you hit the nail on the head for everyone….

  • Dee Forster
    8 years ago

    I grew up with my mother suffering from chronic migraines as well as my sisters. Now I am burdened with the disease so I also know how frustrating both sides are. Great article.

  • Benice Shaw
    8 years ago

    As a person with chronic migraines and as a person who has a son with chronic migraines and as a person who grew up with a mother with chronic migraines, this article really struck home. I hated the anger I saw on other peoples faces when they heard I had another migraine. But I understood because I lived it and live it again. I too have lived both sides so I understand. You covered everything so perfectly. Thank you.

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