Migraines are invisible.
Which means no-one can see just how much devastation they cause.
On the inside, it’s like a big-budget disaster movie. Tornados wreak havoc, tsunamis broil out of control, volcanos erupt sky-high. Everywhere you look the landscape has been ravaged beyond recognition and there’s desolation as far as the eye can see.
But on the outside it’s more like desert island discs; all is calm and barely a ripple breaks the surface.
This leaves me with a dilemma.
Mope around and complain all the time
Pros: people know more about what it’s like and what I’m going through
Cons: it makes me feel worse and I’m not very good company
Smile, keep calm and carry on
Pros: it distracts me from the pain and it keeps me focused on the positives
Cons: people don’t realise how bad it is, or think I must be faking it altogether, or I get comments like “you’re looking bright and well, you must be doing so much better” when actually I feel like I’ve just been hit by a ton of bricks.
My default position tends to be Option B. When I’m with people I much prefer to laugh and joke and chat and maintain as much sense of normality as I can.
Occasionally, I find myself making forays into Option B. After all, it can be lonely feeling that nobody knows or understands what’s really going on inside.
But it doesn’t happen often. Because most of the time I think I’m in denial, even to myself.
I’ve become quite the expert at disconnecting from the pain and discomfort over the years. It’s a coping mechanism that’s served me fairly well, on the whole.
But recently I’ve had a bit more time to think and reflect. I’ve discovered a fresh perspective, and one that’s not all that pleasant to realise – when I disconnect from myself, from all the torment inside, I also disconnect from the people around me.
But I find it so hard to be honest about how I’m feeling, about how my whole body actually feels like a rag doll caught up in a permanent hurricane. I don’t admit it to other people; I rarely even admit it to myself.
I don’t know why.
When people ask ‘How are you?’ I find myself saying ‘Oh, I’m ok’.
A few of my nearest and dearest might be privileged to a ‘Not very good’ or ‘A bit rough’ on a really bad day.
And I expect them to be telepathic, to know everything from the look on my face or the tone of my voice. But my face and my voice have had years of practice at pretending things are ok, so they don’t actually give much away. I’m not a good actor (ask anyone who’s ever played poker with me), I’m just so used to shutting off and ignoring it all.
I’m not being deliberately awkward.
I’m not trying to hide anything on purpose.
I’ve come to the conclusion that it’s because the migraines are constant. And that has seriously warped my perception of ‘normal’.
When I used to have episodic, one-off, start-stop migraines, it was quite obvious to myself and everyone around that SOMETHING TERRIBLE IS HAPPENING RIGHT NOW. I’d go from feeling well to feeling the worst I’d ever felt (sadly not an exaggeration) to feeling well again in a couple of days. The storm was fierce, but it would pass. It’s like when we get freak weather – it’s all anyone talks about.
But in this current round I’ve now had 9 months of continuous migraines. 9 months. That’s 270 days, or 6,480 hours, of which 68 hours have been migraine-free (I record these as part of my attempt at a solution focused approach).
That means only 0.01% of the last 9 months have been migraine-free. The most recent migraine-free hours were in November – that’s two whole months away. Right now, I actually cannot remember what it feels like to not have a migraine.
When a bad storm comes, we can hole up inside and stay warm and dry, waiting for it to pass. But when it lasts for days, we slowly adapt. There comes a point when we can’t stay home any longer, something forces us out. Maybe we need a pint of milk, or we need to check on a friend. So we put on every waterproof we’ve got and out we go – head down, hood up – into the storm.
The weather hasn’t changed, but our attitude and our perspective and our response has changed. And we get used to it. Yes, we prefer beach barbecues in the sun, but this is what we’ve got right now, so this is what we deal with.
It becomes our normal.
So when I say “I’m ok” I mean “chronic migraine ok”, which isn’t really ok at all, but by comparison to what it could be I’m having an ok day.
When I say “not very good”, I mean “chronic migraine not very good”, which let’s face it isn’t very good at all.
But this is what I’m realising – if migraines are invisible, then I’m the only person who knows what I’m going through. So if I don’t tell anyone, then nobody knows. And there’s no point getting frustrated that nobody knows what I’m going through if I don’t tell them!
But how do I do that without becoming a boring, moping, complaining ‘sicky’ person all the time??
The “I’m ok” response has become deeply ingrained over the last few years. It’s what I had to do to get by. But I’m done with just getting by.
And I’m beginning to wonder whether there might be a mystery Option C…
So I’m wondering:
How can I become more connected with what’s going on inside without it completely destroying me?
How can I learn to live in a more open and connected way with the people around me while I’m also living with chronic migraine?
Writing this blog has helped me to start being honest with myself and to share what I’m finding out with those around me, but I’ve still got a long way to go.
Over to you…
Do you have an invisible condition that wreaks havoc on the inside but shows nothing on the outside?
How do you manage this experience?
How do you communicate this to friends and family?
Thank you in anticipation, any thoughts or advice will be very much appreciated!
You can leave a comment below or email me at email@example.com. If you know anyone else who might have any words of wisdom I’d love to hear from them too.
You can find out more about my experience of chronic migraine here – My Brain BSOD
I cannot imagine what you are going through but you are handling it with such dignity and grace. Your blog has inspired me more than once.
I don’t know if you know or not but I have Crohn’s disease… And I think like you, it’s a fine line between acting like nothing is wrong at all and being a total winge. I am extremely lucky that so far my flare ups have been relatively few and far between although I do often have a bad day here and there actual weeks of bad days haven’t happened all that much. When I first had a colonoscopy the nurse who did my review afterwards asked me if I wanted to take the photos to show people what was wrong with me coz its invisible… I declined but could see the benefits lol! I think it’s very hard to know how best to deal with it but I know it’s important to try and let people in and tell them when you feel rubbish… How you do that when you feel bad so much I dunno… Assume I’m feeling rubbish and putting on a brave face unless I’m dancing for joy coz I’m migraine free?… I know I’m not helpful! I am praying for you though.
Love, Claire xx
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I struggle with this too… I too hold back in the honesty department, sometimes from fear that I’ll just fall apart, or make my friends/family distraught. I think the key for me is gauging the context based on who I’m with (how well we know each other, how emotionally open they are with me, etc.) and how I’m feeling. I think it’s totally okay to withhold the whole truth when I don’t feel like talking about it, and then opening the flood gates in other situations. Keeping it in all the time isn’t healthy, but neither is spilling my guts all the time either. I’ll know when I haven’t tuned into my emotional-venting needs for a while because then the flood gates open without my consent!!
I think having a few different people to turn to in these moments is ideal, and keeping the conversation lighter with other people is fine too.
When asked “How are you”, my grampy used to say “You don’t want to hear about all that.” I’m thinking of trying that one.
“Things are tough, but okay and I’d rather not get into it today” is also totally fair. Deflecting the conversation is sometimes the path of least emotional resistance for me.
It’s so hard sometimes to know in the moment what to do. I think it gets easier with practice?
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