I’ve gone back and forth about this post.  Whether to write it or not (whether to post it now that it’s written).   This goes against a decision I made a while ago – a decision to not let my migraines define me, and part of that decision was not talking about them to any large extent in any social media forum.

Why?

Because social media is not real life.  It is a carefully crafted self-portrait.  It is our public face, who we are in front of others.  Some people don’t mind being emotionally vulnerable.  I am often amazed at what other people feel comfortable sharing about themselves on social media.

But that’s others.  This is me.  And what I realized is that any time I think about posting about my migraines on Facebook, it is always a carefully constructed image – me as the sufferer, me as the humorous overcomer, me as something.  But it is just not honestly, really me.  I can’t get past the idea that posting about migraines is a bad idea for myself.  They are something I need to endure quietly, something that I can neither wail about for pity (look at what I have to deal with!) or boast about for admiration (look at how I deal!).  They just are.

However, it occurred to me that there are a few things that I wish people knew better about my situation. This list is mine, about me, and not necessarily meant to extend to all people with migraines or other chronic pain or illness – everyone’s story is his/her own.  But from what I’ve read and the people I’ve spoken to, I think some of these are not uncommon.

5 Things I Wish You Understood About my Migraines

  1. I appreciate your concern, but I wish you wouldn’t ask me how I’m doing. Well, I guess I’m starting with the really ungrateful sounding one, but I don’t mean to be.  In the fifteen or so years I’ve battled the migraine beast, there have been some decent years where the migraines were barely an issue, and there have been some bad years too.  During those bad spells, everyone who knows what I go through immediately wants to know, “How are you?”    I know what you’re asking.  You want to know if I’m doing any better.  Or the same.  Or worse.Can I be honest? That question stresses me out so much!  Why?  Because it is so open ended.  For most people, the answer is simple: “Fine.  How are you?” but that’s not what you’re asking for.  And that leaves me to figure out, in that moment, how much information to give you. Do you really want to hear all about it?  Should I tell you that the last few days were awful but I’m doing better today, or should I just say “Good, thank you!” and leave it at that?  When I’m feeling awful, should I be honest or will it just sound like I’m complaining again? How much information do you want?  How much is too much?  But I also don’t want to be abrupt.  I want to show you how much I appreciate your concern – because I do!It is such a hard question to answer!

    “Well, then, how should I show you that I care?” you ask.  That’s easy.  Just ask me about something else.  It might sound odd, but when you ask me about how my classes are going, what’s the latest on my baking business, what am I knitting just now, what am I writing… those questions excite me.  They focus my attention on the things I love, not on that one thing that sometimes keeps me from doing what I love.  If I feel comfortable with you and I feel a desperate need to open up about my migraines, you will get the dubious pleasure of hearing about how they have affected my teaching, baking, knitting, and writing enterprises.  But I’d love to focus on something else instead!

    DSC_0412

    See? Happy cupcakes! I can talk about cupcakes all day.  Here’s a box of birthday hedgehogs.  Except I seem to have misplaced one…

     
  2. Maybe I’ve managed to fool you, but to be honest, I do not have a positive attitude about my migraines. I am not a very saintly, noble sufferer.  Really.  When I get the “How are you?” question, there’s like this little switch that gets flipped.  Bright, happy, optimistic, hopeful me comes bubbling out.  I will tell you that I’m okay even when I’m not.  I will tell you that it’s bad, but I’m getting through it!  I will tell you, it’s been a struggle this week but the weekend’s coming.I will tell you a whole lot of things, but that’s partly because I don’t want to sound like all I ever do is complain.  I don’t want to bore you with a litany of suffering. It’s also because if I told you how I really felt, it would not be a fun conversation.  An awkward silence would follow as you tried to think of what to say.  You would want to be properly encouraging.  You might become horribly worried about me if things are that bad.  But the truth is, they’re pretty much always this bad and I’ve learned to deal with it.  I’ve learned to be chipper out in public and save the wobbly wimpy stuff for the couch in my living room with all the blankets and half-knitted projects to envelope me and a considerate husband who delivers hot cups of tea and knows exactly how to be with his slightly broken wife.

    This is another reason why the question in #1 can be stressful because sometimes my answer to “How are you?” is “Life sucks and I hate my head and I’m feeling particularly dramatic about it right now.”

    And how do you respond to that?

    In my case, this is usually a good answer: “Wow, no fun, huh?  So what’s up with your baking these days?”

    Don’t let me wallow.  Don’t let me complain.  I do enough of that on my own! In fact, let’s talk more about you.  I need to think less about myself anyways!

DSC_0414

This is how I feel about my migraines most days. (Also, I think I found the missing cupcake)

3. I don’t know what causes my migraines and I doubt I ever will… and I’m okay with that.  Whenever I answer Question #1, the question that often follows (because it’s tough to make a conversation out of a migraine, isn’t it?) is this one:

“Oh, I’m so sorry.  Do you have any idea what causes them?”

This is another question that stresses me out.  Even though I understand and deeply appreciate the sentiment behind it (which is something along the lines of “Oh how I wish someone could figure it out and help you so you don’t have to suffer anymore!”), it is a topic that I have talked over with dozens upon dozens of people and I begin to feel like a broken record.  Here’s my answer:

“No, and I don’t think I’ll ever know.  I know what my triggers are, such as bright, flashing lights, harsh chemical smells, and piercing noises, so I just try to stay away from those.  Right now, my medication keeps me functional.  It has its downsides, but the side effects are preferable to the greatly increased number of migraines I’d be getting otherwise.  This is as good as I’ve been in a long time.”

Yes, I’d love to not have migraines anymore.  Yes, I wish I knew what caused them.  But figuring out what causes migraines in any given person is extremely difficult.  I can’t tell you how many times I’ve heard this one: “My cousin/friend/sister-in-law/neighbor used to have migraines until he/she did X and now they’re gone.  Have you tried X?”

Chances are, I’ve heard of X.  Chances are, I’ve considered whether trying X is a viable option.  Chances are, X isn’t the solution for me, anyway. Either way, I’m good where I am.  I’m doing what works best for me for now.

4. Sometimes I get jealous. Like I said earlier, I’m not a noble sufferer.  In fact, sometimes I find myself feeling a bit bitter and jealous of all the lucky people out there who don’t deal with chronic pain.  It’s so petty and silly!  But I’ve been there and I go there more times than I’d like to admit.

What I have to remind myself of is that no one’s life is perfect or easy, and what I’m often seeing is that carefully crafted public persona – the exact same thing that I’m always trying to do myself.  I’m not seeing what’s going on behind that fa├žade. I’m just assuming that everyone else has their acts together and I’m the unlucky one who’s just faking it!  The fact is, we all deal with suffering and difficulty throughout our lives in many different forms, and a lot of us hide most of the really hard stuff from all but a few.  I forget that sometimes.

With that jealousy, though, comes a kind of fear.  Everyone else has their acts together, right?  Everyone else gets their work done, is productive, finishes what they start.  Sometimes, that’s really hard for me.  When a migraine lasts for days, I begin to tap out of my reserves of energy and strength and willpower.  Sometimes, I don’t get the work done on time.  Sometimes I don’t measure up – and there’s nothing I can do about it.

I hate looking weak, showing myself being subject to the pain rather than having power over it.  I want the people I work for, work with, and spend time with to see me as someone competent, someone trustworthy, someone consistent.  Whenever the migraines cause me to fall short, it is depressing and frustrating.  I want to be known for being reliable, not as the person who uses migraines as an excuse.

DSC_0422

The best medicine for a migraine is peace, quiet, a cup of tea… and some biscuits if you have them.

5. I am always terrified that you think I’m faking it. I don’t know if this seems odd, but I find myself thinking along these lines quite often.  See, one big reason I try to downplay what’s really going on, to be bubbly and cheerful, to dismiss the topic as soon as possible, is because every time I talk about my migraines, I wonder who is doubting me.

“Are they really that bad?” I imagine you wondering as I relate the latest news in migraine land.  “Is she faking it for attention?” I am convinced you are thinking as I creep dramatically through the house in my darkened glasses and ear plugs.  “It’s just an excuse to get out of doing ____, isn’t it?”  I read in your concerned expression.

I sound paranoid, don’t I?  But I have had more than one doctor make suggestive comments implying that I am faking it.  That all I want is the drugs.  That it’s all in my head (hey – that one’s actually true!).  And so I imagine that many other people wonder the same thing.

I hate calling attention to my broken brain because any attention, in my crazy little mind, might include that one person who stands there and looks at me and sees a faker, an attention seeker, a drug addict.

I’ve never let one of those awful doctors see the humiliated tears they cause before they leave the room, but their demeanor and comments haunt me long after I’ve left.  My condition is invisible.  My pain is invisible.  All that my friends, family, acquaintances, and doctors have to go on is my word.  And the horrible truth – that there have been people who privately believed me to be lying – is something I can never escape.

~ ~ ~

So there are my five things about me and my migraines.  I don’t know if this list helps you to understand me.  Migraines are bizarre, mysterious, annoying things, and learning to live life through them and despite them is something I am still grappling with.

If you read any of this and thought, “Oh no, I’ve said that one before!” or “Is this directed at me?” or anything like that, please don’t feel like I wrote this to complain about anyone in my life who has asked me questions and offered sympathy and love; who has attempted to share in my frustration at the lack of answers; who has tried to help in any way they think they can.  I don’t think I’d be a functional human being if it weren’t for the caring people in my life.

These are just things that I think and feel sometimes.  And maybe they’ll help you know me just a little bit better.

DSC_0816