How do you talk to someone with a chronic illness, like chronic migraines? What do you say?
First and foremost, I don’t have to talk about it ALWAYS… while it’s part of me, it’s not ALL of me, by any means! Sure, I’m a freaking expert by default on the disorder, but I am so much more! I love having fun with friends, talking about our mom jobs and children, my passion for my Younique biz and empowering women, traveling, learning new things, current events, movies, home projects, medical issues, family, and so much more!
Sometimes I feel down – discouraged about the neverending nature of my illness and sometimes I want to use my twisted humor to deal with it. And it’s sooo okay to laugh about it. I do a LOT of eye rolling and laughing. It is so therapeutic! Lol.
One comment I get a LOT from others: “I get migraines sometimes but they’re nothing as bad as yours.” This makes me sad; don’t ever play down your migraine disorder just becuz you’re episodic and not chronic! If you’re a migraineur, I view you as a fellow warrior, whether you have one migraine every three months or you suffer 15 or more a month! I’m no different from you – we both have a neurological disorder that has no cure. I’d love to talk with you about your treatment… maybe there are some options available you haven’t heard of? And I’d been interested hearing how you cope. I’d love sharing with you, fellow warrior! Don’t downplay your migraines! Even one migraine EVER is one too many for any human to suffer. We deserve more research, we need more treatments, we need better medical care, we need less social and medical STIGMA, we need more understanding, we need more discussion and awareness, and we need a CURE.
Another comment I get from well-meaning peeps: “Are you still getting those migraines? I thought you were getting the botox?” or… “I saw you this morning and you looked fine!” Yeeeaaah. These are tough. First, as of 2017, there is NO CURE for migraine disorder. There are three types of treatments to help: 1) preventative, 2) abortive, and 3) rescue treatments. For Chronic Migraineurs, usually a combination of all three treatments are required to MANAGE your neurological disorder. So first and foremost, the word “chronic” means simply – it doesn’t go away, it doesn’t end or stop, but it can be MANAGED. So, yes, I get the Botox and yes, it helps and yes, as disappointing as the reality is, I still get the migraines. To the second question… darn this can be a tough one to explain. I can look “fine” even when I’m migraining. I am so used to pretending and pushing thru the symptoms just to get thru the day… it would be embarrassing to me to “look like I feel;” I don’t want to look like a freak. I already feel like one becuz of this nasty disorder. Also, there’s a good chance that when you saw me and I looked fine, I actually might have been FINE! The devious part about Chronic Migraines is they are sneaky and can be creepy or instantaneous. The nature of the disorder makes my nervous system as sensitive as a toddler with PMS. I can wake up “fine,” run a couple of errands and then – bam! – a change in temperature, a startling noise, a fluctuating hormone, or basically anything in regular life can trigger a migraine. And then – I’m cancelling on you becuz my little migraine monster is demanding my full attention. They are predictably unpredictable and sly ninjas just waiting to ambush. Frustrating making plans with me? You betcha. While I am reliable, my health is not. And it never fails to disappoint me. I feel awful letting people down and I feel awful missing out.
I do hope some of my lengthy essay can end the awkwardness.😊 Wanna chat about it? You know I’m always up for discussion! Thanks for listening and peace and love be with you all! 💜