Chronic Pain and The Erosion of Self 4: Online Friendships 

I dithered for a while as to whether to include this topic in the ‘Chronic Pain and The Erosion of Self’ series or give it a different title. Online friendships are something I have gained through chronic illness rather than some that I have lost; that said, they are something I’ve gained ONLY because my life has been changed so entirely by Chronic Daily Migraine and Fibromyalgia. After going backwards and forwards on it for a while, my already addled brain grew tired, so I decided to just write 😊

  

When I was working full time I still had more typically ‘chronic’ migraine to deal with (the official definition is 15 days or more of head pain with at least 8 of those being full blown migraines), so when the time I was at work, working at home or in bed with a migraine was added up, there were years where there was pretty much no time left over for anything else. In the years when I did have some disposable time, I loved meeting friends for a drink and a catch up or going out on girlie shopping trip on a Saturday in search of a handbag to match my latest pair of heels. 

Such things feel like a very distant memory these days. As I discussed in my last post, maintaining friendships has become significantly harder in recent years. I have however stumbled upon a different kind of friend via the online (mostly Twitter based) Spoonie community.

I was a little hesitant about Twitter at first but joining was a really good thing for me. As with IRL friends, I have found different friends who play different roles – some who regularly share my content, some who cheer me on when they read my posts and some who stay in touch through private messages. I’ve even found a friend who I exchange messages with several times a week who knows when my big appointments are and what aspects of Chronic Life I’m particularly struggling with; I know these things about her too. It’s great to find people who understand all the ins and outs of your condition since they have some version of it too but of course they’ll always be one or two online buddies who stand out – as with all friendships, bonds that are formed vary in depth and durability.

Obviously not all online  friendships involve lots of private communication or bonding; some are conducted entirely in public. These public displays of support and understanding via likes, shares and comments on content are important too – there is something comforting about knowing that there are people out there (all over the world in fact) who can relate to the challenges we face. It is all too easy to feel isolated and freakish – something as simple as a Twitter friend saying “I know! That happens to me too!” can really help. When we manage to complete a task that is simple for a healthy person but a challenge for us, it’s nice to have Twitter Spoonie friends to share a “Woo Hoo!” with.

I think the fact that we live in a variety of places is an advantage of online friendships. Chronic Life can be very hard and sometimes it’s easier to express frustration or even moments of despair to a friend who isn’t part of your day-to-day IRL situation. Our spouses and parents do a lot of worrying about us; sometimes it’s good to be able to share the difficult feelings chronic illness generates without worrying that we’re making them worry!

What is the biggest advantage of online Spoonie friendships in your experience? Have you encountered any down sides? 

Wishing you good luck and happy days,

Kindra x

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Chronic Pain and the Erosion of Self: Friendships

My relationships with the people in my life come in all shapes and sizes and every single one has been impacted by my chronic illness. Being my friend isn’t easy, but that’s hardly surprising since Chronic Life is challenging in many ways. The hard fact of the matter is that some friendships don’t survive hard times and when you’re chronically ill, the hard times can go on for a loooong time. 

  

Friendships don’t always last even when chronic illness and disability aren’t a factor. People go in different directions in life, develop different priorities and lifestyles. Friendships don’t necessarily end with a blazing argument or other such drama; some just aren’t built to last. I’m now in my mid-30s and long ago came to the conclusion that friendships really are a matter of valuing quality over quantity. I have many acquaintances but a small handful of people who I could call at 3am with an emergency situation and know they’d have my back; these people know that the same applies if they need me.

There’s no avoiding the fact that my illness changes the friendship landscape though. It can be a long time between visits or outings with my friends. My condition renders me unreliable re. making social plans, something that I find infuriating as I’m not unreliable by nature. It makes me reluctant to makes plans at all; I loath having to text on the day & say that I can’t move. The fact that I’m in terrible pain as well as immobile means that just saying ‘come to my place instead’ usually isn’t an option.

It is also all too easy for me to speak to my friends less and less. So much of my life is dominated by my condition that I sometimes feel like it must be a chore to listen to an update from my life, especially when there is little or no progress on the medical front to report.

I don’t have a magical answer for these problems by any means, but I’ve started to figure out ways to maintain important friendships. Even though I can’t see people often, I try to keep contact going via text, phone & email. I might not be able to, for example, make it to my best friend’s gigs (she’s a singer and a very talented one, you can check out her folk & blues gorgeousness here) but I try to keep an eye on the dates so I can at least give her a call the next morning and hear all about it. It’s not unusual for me to have a functional hour or two in the middle of the night which obviously isn’t the time find calling people but it’s a good opportunity to email a friend. 

There are changes I need to broach to enable me see more of the people I care about. My natural inclination is to hide away  in the dark during high pain days for obvious reasons but I’ve also developed the habit of not wanting people to see me when I’m well enough to sit up but not go out. If I can find a way to allow visits at such times, from people who have in all honesty seen me looking like crap before, I know it will do me good. I also need to be bolder when it comes to calling my close friends at those random and all to scarce times that I’m mobile – I know that if they can possibly free themselves up for a visit from me, they will.

It’s important to remind myself that while my condition causes significant inconvenience to those close to me, there are reasons that I have these people in my life to begin with. I’m a loyal and supportive friend and am able to find the humour in most situations. I’m happy to listen to the worries of my close friends whether they’re huge issues or relatively minor ones and give them considered advice if they ask for it. We Spoonies have to remember that we are more than our illness or disability; we are worth being friends with!

Do you have any particular strategies for maintaining your friendships?

Wishing you good luck and happy days,

Kindra x

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Check out my YouTube channel.

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