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Living With Migraine – An Invisible Illness

In Defiance I Choose… Joy.

Migraine and living with invisible illness has been a challenge that is tough to put into words. This is Invisible Illness Week however, so I’m going to do a little free writing and share some personal thoughts and experiences about living with invisible illness here on the blog.

When my illnesses stole the things in my life I considered at the time to be most important, I was bitter. Doctors offered no hope for anything better. I became depressed. I stopped caring about everything but my family, but my attitude about everything else made those relationships suffer just the same. I was a victim of my body’s betrayal of me and I was so angry there wasn’t even a way for me to talk about it… no words that were sufficient… even if I’d had someone who would have understood me.

But I was alone most of the day, every day, in mind, body and spirit. There was no one to share my thoughts and talk things through with.

I was mad at God and that relationship suffered, which made me feel worse because I am a spiritual person, and getting through this required me to draw heavily on those spiritual beliefs.

I was hurting so bad emotionally as a result of these losses that looking out my window at them (my prior jobs/passions here at the farm included teaching and training show horses and youth, as well as running a large Arabian horse breeding facility which I’d closed) caused such heartache it literally took my breath away. In fact, there were days where just looking out that window actually made me vomit.

Inside my home was my large glass studio, calling to me, reminding me that I couldn’t practice my art anymore either. All those creative juices I’d cultivated for decades now sat swimming in my brain with nowhere to go.

Despite being literally surrounded by reminders of things stolen from me, I was eventually able to make peace with my situation. I didn’t like it then, and I will never be “okay” with it, but I did learn a different way to think about things.

I can’t change me, so I made a decision to change how I looked at the world around me. It’s a decision that hit me again last week as I was faced with a choice I wanted to pretend wasn’t there…

The Trip

My family is planning the trip of a lifetime to Alaska, some of which I will be able to participate in only with an extreme amount of effort, and some of which I will not be able to participate at all. There is another young family member with limitations to consider. My family tries but doesn’t understand my limitations, and despite my best efforts we were at an impasse.

To make things worse, someone pointed out that there was a horseback ride through the Alaskan wilderness some members would be taking which I would be missing out on. *Ouch*

They didn’t mean it to be hurtful, but there I was doing the ugly-cry as I tried to escape the room and the eyes that followed me.

So, there was my choice. Go, or stay.

Part of me wanted to stay home because I didn’t think I could face the prospect of watching everyone I love doing the things I yearned deep down in my soul to be doing too. It was so unfair! I just didn’t know how I could do it. I didn’t think I could face standing in the shadows or holed up in my cabin during those activities that everyone else will be doing without me. Activities by which I used to define my life.

Then I remembered I had another choice to make. Choose to let the negative part of my life that I can’t change ruin something that could be wonderful… or again – choose joy.

It’s true, the wonderful moments will be fewer for me than the others of the group, but shouldn’t that make me happy that they are living such a beautiful experience? Shouldn’t I be okay with watching them have the time of their lives, knowing I was at least able to be there to see it? Shouldn’t I love my family for wanting me along despite the fact I am high maintenance and will hold some of them back?

It’s true that I’ll be spending a lot of time in the cabin looking out a window, but what a view it will be!

Migraine, Lupus, Sjogren’s and Dystonia has stolen a lot of my life from me, but I am resilient. I will persevere. I am defiant. They can’t take this from me. The heck with you, body — Ha ha ha!!! I am living joyfully!

This post was written for Invisible Illness Week. Details of this awareness campaign may be found here:

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.


  • body
    7 years ago

    You have a great attitude. May many learn from you!

  • Julie
    7 years ago

    Good for you! And while your there if you can’t do any sketching take a lot of pictures then maybe later you can turn them into sketches. But a change of view might be great for you! Enjoy

  • janenez
    7 years ago

    You are an inspiration. Treasure the things you can do. Rest up and take good care of yourself while they are out. Release any bitterness that comes up. Savor the enjoyable moments. Enjoy the view – maybe sketch the view. You never know how those creative juices may flow into a new release – something you still can do.

  • arden
    7 years ago

    I LOVE your spirit, Ellen. You prove the point that You are not your body. Your spirit is strong and vibrant, unlike your poor body. But dont send it to heck and back yet, it is still created in the image of God. It allowed you to grow, love, marry and have a family. Each organ is a wondrous gift. Just think of how amazing your eye is, what an incredible pump your heart is(open and close 36 million times a year!)Yes, you have certain
    diseases. But I bet your skin still provides protection and warns you of danger, heals when you cut it. Your bones still mend if broken I assume, and your cells are constantly renewing.
    You bore children, what an incredible gift from our Creator.And this is a quote:”Be we reminded that a perfect body is not required to achieve one’s divine destiny. In fact, some of the sweetest spirits are housed in frail or imperfect bodies. Great spiritual strength is often developed by people with physical challenges, precisely because they are so challenged.”Russel M. Nelson. For the physical gifts that you do have, thanks be to God. Dont be mad at God. Our Father loves us and you will one day have a perfect form – limb and joint restored to its proper frame, body and spirit reunited never to be separated again. Look forward to that! You are undoubtedly one of those sweetest spirits. Your choice is awesome.

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