A couple of weeks ago, Georgina Grogan (of She Might Be Loved) ran a series of guest posts on her blog under the umbrella of ‘Chronic Pain Awareness Week’. I found it incredibly eye-opening in so many ways, not least because it highlighted the experiences of so many people who suffer with chronic pain in one form or another; chronic pain really does take so many forms.
Ever since I was diagnosed, I have been conflicted over whether to be upfront about my own illness on here. I have alluded to it a number of times, and I’ve flirted with the idea of just saying it but I’ve never fully committed in any useful or definitive way. BUT after reading the wide variety of experiences included in Chronic Pain Awareness Week, and knowing the impact that the openness of others has had on me, I realise that representation is key in making invisible illnesses visible. So, here goes…. I have fibromyalgia with associated chronic fatigue syndrome.
This brings me around nicely to the real subject of this post, which is how I’m trying to deal with feeling guilty about my chronic pain and the impact it has had on me and others around me. The one thing that haunts me every day is this nauseous kind of guilt. I feel guilty about everything; missing blog posts, cancelling on people, being a burden, costing people money. I carry this guilt with me all the damn time.
My guilt stems from a phrase I’ve heard too often: “You don’t look ill.”
No, I don’t look ill. You’re right. I mostly look fine, if a bit jaded. I’m not always on my crutches, some days I’m even almost quite sprightly. Then the next day I’m in bed, and the next day, and the one after that. This is one of the major issues that the medical profession, the media, and people in general have with fibromyalgia; many don’t believe it exists. AND THAT BUGS ME. I felt like such a bloody fraud at every step of my diagnosis and I’ll be made to feel like a fraud at my hearing for support. This is my life now. Yay.
I haven’t intended for this to be a big ol’ pity party, recently I have been actively trying to narrow down the most effective ways to tackle this horrible guilt that gnaws away at me all the time. Effectiveness and efficiency is key, as I don’t have the energy to spare on chasing something that isn’t going to work! Here’s what has worked, and is working, for me for chipping away at my guilt about my chronic pain:
Accept what you can and can’t do → I love getting drunk and being silly. I love walking. I love dancing at gigs. I love travel. I can’t really do very much of any of those things any more. I have to make that okay. Instead of making a plan to travel 50 miles to meet someone for a gig in a months time, my plans need to be a little more spontaneous.
Rather than planning to go out for dinner next week, I suggest a pint and a Pokèwalk on a day I feel okay. Lunch dates become Twitter chats. Hang outs become phone calls. Spontaneity and the internet really are the two main tools that are driving down my guilt levels with regards to my friends and family. Despite my maximum social awkwardness, the internet is also widening my social circle, especially lately – there are some seriously good eggs out there. Find them.
Don’t overdo it on days you feel okay → this came from something the lovely Faith from the (sadly now defunct) blog ‘Music and Eyeliner’ said on her Snapchat a good few weeks ago. I am such a bugger for overdoing it; on a good day I race through my list of things I need to do in case I don’t feel okay again for a while. Of course, after my busy day I’m out of action for a week or more… it’s beginning to feel like a self fulfilling prophecy.
Doing a smaller amount of things day by day is helping me to feel more useful, more productive (kinda, I’m getting there) and has impacted on the amount of guilt I’m feeling. So, okay, I’m not paying my share of the rent right now after being forced out of work but at least I can contribute to our home life. I’m making myself less of a kept person in little ways, and that’s helping me so much.
Accept help → This one sucks and I struggled with it. I used to be so self reliant, formidable, and strong. I just want to jump out of bed, seize the day, be able to lift things and pick them up without dropping them again. However, most mornings I shimmy out of bed like a slug and often my boyfriend has to help me.
It’s a tough one, because this wonderful person who supports me financially and emotionally also helps me out of bed, he helps me sit up, he goes to the shop for me, he makes my meals etc… guilt city. But he also tells me that he wants to do these things and I have to believe him. His help facilitates me being able to live my life. Similarly, as soon as I started to accept that I needed crutches to help me walk, I realised I could leave the house on days I otherwise would have been completely housebound.
Don’t accept any shaming → shut that shit down. Do it the very first time anyone close to you says anything bordering on shaming. “You’re such a lazybones!”, “Y’know, I’d love to sit on my arse all day”, “So basically you want money for doing nothing all day…?”, “You don’t look ill.”, “Can’t you just go outside, get some sun?”, “You know a bit of exercise won’t do you any harm, yoga is meant to be really good….” FUCK OFF.
Confrontation is exhausting, especially trying to make your point when the fibro fog descends. But nipping any shamey chat in the bud early saves so much heartache further down the line. Things that those closest to me have thought were just harmless jokey digs have fuelled days of guilt. So, shutting it down quickly has helped remove that particular type of rubbish from my mind.
Reframe tasks to suit you → I’m becoming a master of this. I categorise my days into three types: bed days, sofa days and active days. I drop tasks into each of these categories. So I can research or type up a blog post on a sofa day. I can see my doctor on an active day. I can try to read on a bed day.
Not planning too far ahead any more gives me some flexibility too, an active day can turn into a bed day pretty quickly so not having to cancel anything if that happens helps my guilt about letting people down. Sometimes deadlines and appointments are unavoidable, this is real life after all, so I try to reframe them into something I can still manage. I make them smaller. Lately I ran the vast majority of a three day social media campaign for a conference from my bed (the internet is a wonderful thing) and all went very well indeed.
I recognise that to assuage my guilt over not being able to contribute as much as I am used to, a lot of my coping is concerned with clawing the ball back into my court. I choose to accept help, I reframe tasks to suit me, and I don’t often commit to plans. I think with something like chronic pain, the predictability and control has gone somewhat. I can’t be dealing with all this guilt as well, and I’m slowly getting to a place where I’m feeling okay about that. It’ll likely never disappear completely, I’m a natural born worrywort from a long line of people pleasers, but I feel guilty less often and less intensely. Much like everything else with this illness, it’s trial and error.
For more reading about living with, and ways to deal with, chronic pain check out this post on how to perk yourself up when you’re low on spoons by Lottie L’amour, or things I’ve learnt since living with chronic pain by Leah, and life hacks for spoonies by Georgina Grogan; all have been written with contributions from a variety of people for She Might Be Loved chronic pain awareness week. A big thank you to Georgina, and everyone else who contributed, for raising awareness with these posts and giving me the inspiration and confidence to contribute to the conversation by talking about my own chronic pain.