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 faÃ§ade is much less trouble, much less messy than a faÃ§ade 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.