Thank you so much to everyone who responded to the previous post Dilemma, either in person or online.
I’ve really appreciated your honesty on how you talk about (or more often don’t talk about) invisible illnesses with friends and family.
It seems there are a few key themes:
People with invisible illnesses tend to play down how they are feeling to protect the people they care about.
When pain continues for a long time, the person experiencing it tends to stop talking about it. They even stop admitting the pain to themselves to some extent.
Denial is a survival tactic. It can be effective in certain situations but causes damage if left unchecked.
I said in the previous post that I felt there were 2 options when faced with the invisible illness of chronic migraine (migraines that go on and on for months and months without a break)
Option A: mope around and complain all the time.
Option B: smile, keep calm and carry on.
But I started to wonder if there might be a Mystery Option C. One that would enable me to admit to myself how bad I’m feeling without falling to pieces and would also provide a way to communicate this to other people in a way that’s helpful for them and for me.
So after hearing your responses, here are my current thoughts about that Mystery Option C.
When someone says “How are you?” I don’t want to say “I’m ok” when I’m not. But I also don’t want to become a snivelling snotty heap on the floor. So I’m trying out a new line:
“Life is really tough at the minute, but…”
With this response, I can acknowledge that things are tough without going in to great detail (unless it’s at the right time, in the right place, with the right person). Then I can move on to the positives, e.g. “I’ve got good friends around me” or “I went for a nice walk yesterday” or “I had a migraine-free hour last Monday” (I really did – the first of 2015 – it was amazing!)
I’m giving it a trial period – if you’re on the receiving end, let me know what you think…
One thing I have come to realise is that I’m very much in denial to myself about how much pain and discomfort the migraines cause.
After the previous blog post I was touched by how many friends reassured me I can be totally honest with them and tell them just how bad I’m feeling and not hold anything back.
It was then that I realised I don’t intentionally not tell people, I’m genuinely not telling myself either.
If all you get is a flat “I’m ok”, that probably is all I’m feeling, it’s all I’ll let myself feel. Because to feel it full force would be totally overwhelming.
(I do feel it occasionally. I feel it in the mornings, when I wake up and a wave of profound pain hits my head and the nausea and vertigo rudely yells that it wasn’t all a nightmare and there’s a whole new day to get through. But after a couple of hours I’ve adjusted enough/tuned it out enough to get on with the day, even if it is at a snail’s pace.
And I feel it when I have migraine-free hours. I had one last Monday, it was beyond amazing, I sang and danced and laughed and it was blissfully beautiful. But then they pass and the migraines return with a bump and a thump. And then I really feel the pain – both the physical pain and the emotional ‘here we go again’.)
I realised I’ve inadvertently trained myself to disassociate from the pain of the migraines.
And in doing so, I’ve become disconnected from myself and from the people around me.
I’ve shut down and I’m constantly tuning the migraines out as much as I can. But that in itself takes a mammoth amount of effort, which I’ve realised leaves less energy for the things that really matter.
I’ve managed to numb the pain, but at the same time I’ve accidentally numbed emotions and relationships. Not completely, but enough to have noticed things aren’t the way I want them to be.
I’ve had to learn the hard way that distraction is ok at times, but I can’t keep it up indefinitely (I tried that approach and it didn’t do me any favours).
So if I want to connect again, it looks like I need to be more honest with myself about how I’m actually feeling and to have true compassion for my pain.
I also need to be vulnerable with the people around me. But that takes effort. And it’s painfully difficult. I’ve lost such a lot, and my sense of security is fragile. I’m scared of losing more. So I put up walls to protect myself. But all that achieves is to push away the very people I’m scared of losing.
I want to live my life fully connected to the people around me. If that means I have to acknowledge what’s going on on the inside too, then that’s what I’ll do. I believe it’s worth it, though it might not be easy.
I’ve started to take some baby steps towards this, but it’s going to take time to change some strongly ingrained survival tactics.
If you’re interested, here are 3 of the things I’m using to help overcome some of the denial:
*Regular ‘venting’ sessions with a few people I can be totally honest with.
*Practicing mindfulness as a way of ‘tuning in’ to how my body is actually feeling (interesting stuff, more on this in another post)
*’10 second moans’ – creating an opportunity to tune in and also to tell people how I’m feeling without it taking over a whole conversation. Sometimes I’ll even be blatant, e.g.
“Can I have a 10 second moan?” in the middle of dinner.
“Yes of course” (I have some very nice people in my life).
“My head feels like it’s being stabbed with a screwdriver”
“I hate migraines and I want them out of my life, SCREW YOU MIGRAINES”
And then I’ll ‘grr’ or ‘aarghh’ or pull a woe-is-me-it’s-the-end-of-the-world face or do a rude hand gesture at some invisible migraine beast.
And then it’s done, and I’ll look a bit sheepish for having actually shared what’s actually going on inside. And then I’m surprised to find that the people I’ve told don’t mind, they haven’t left, they don’t look disapproving. In fact they’re a bit relieved to know why I’ve been grumpy all evening.
So there you have it – my current thoughts on Mystery Option C. It’s still a work in progress and probably will be for a very long time to come. But that’s ok – life can never be boring because there’s always something new to learn!
It sounds (of course) like a wise way (or ways?) forward. If I can help, you know where to find me.
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Hi Naomi, I so love what you are doing, its about time we were all more honest with each other (when the time is right). I have had one thought over the last few weeks which might be a useful form on non verbal communication at least for those in the know. I am sure you have seen the small round badges that used to be common years ago, and you sometimes still see pinned to hats etc.
Well I was wondering if you could have a collection of these which you could wear. (only one at a time!). Each badge could give simple information. Lets say green could be ” I feel bloody great today as I am migraine free”. Amber could be ” normal or average migraine” and red for terrible pain, approach with caution. You could take it further by combing numbers with the colours, but this would depend on how many badges you wish to carry around.
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Hi Naomi – I love your “option C” line for communicating. Short of saying “why do you even ask anymore?” I’ve also had a hard time finding something to say to well-meaning friends and family who just want to help. I’ve actually started using a numerical system, so that the interested party can adjust their responses based on what I say. A “4/10” day will have someone anticipating that I might not make it out later, and a 7 or 8/10 means I might not be eating later or remember any of the conversations I’ve had. It helps my husband with meal planning too, as he’s learned that anything over a 5 is soup or simply water 🙂
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