Make Friends, Make Friends, Never Never Break Friends...

… Unless you're a spoonie, that is.

I've been reminded this week how difficult it can be for us spoonies to maintain friendships, particularly with non-spoonies.  It's no coincidence that my closest friend happens to be a spoonie too; though that's not why I love her, as disability/illness doesn't define you as a person.  No, I love The Wife cos, among many reasons, she understands my limitations and difficulties, mainly because she shares a lot of them.  She would understand that, for example, while going to Tesco with my new enabler may not be mind-blowingly exciting, it's a big deal for me, a) because of the whole trusting someone else to look after me thing, and b) because it's me going out by 'myself'.  A non-spoonie friend, might give me an 'Ohhh, that's nice', and may even feel a bit sorry for me that such events are often the highlight of my week. 

No disrespect to my non-spoonie friends at all, and I know I'm really lucky to have the amount of friends I do, some of them being pretty close.  However, because I'm a spoonie, and have to rely on other people to take me out, physically seeing my friends can be a real nightmare to organise and if they live more than around an hour away, the likelihood is that I will never get to catch up with them.  Thus, I do a lot of my friendship maintenance via Facebook, and by text and e-mail, which I know is not the same, but it's often the best I can do.  When I do get to see friends – my 25^th last August was the most recent 'reunion' – it's all the more meaningful though, consequently, I'm usually pretty bummed out when I get back home, knowing that it'll probably be another year till I see them again.  Fortunately I do have some local friends, but meeting them is a challenge too, as they work/study/have children, and their free time is often no good for me.  Most of my friends at least understand that it's difficult for me to get to them, and are very accommodating, either coming to meet me, or simply by being patient; letting me make the arrangements of where and when.  Course, then I feel guilty that I'm putting people out, taking up their time when they could be doing something else.  But spoonies have to learn to live with that guilt – the 'I'm such a burden' phenomena – and get over it, otherwise we'd never get anywhere in life.  I think I'm a good judge of character too, and seem to have chosen some very patient, reliable, understanding and brilliant friends… Or so I thought.

The reminder that I mentioned above came via 'friend' of almost 15 years, K, after a total misunderstanding; Facebook doesn't always help to maintain friendships.  It's a long story, and I'm not gonna use this blog to vent but, in summary, I was basically told that I'm a crap friend, who doesn't communicate, doesn't listen and, most interestingly, doesn't know what loneliness is.  Ha, where do I start?  I do feel guilty – there's that word again – that the best I can offer my friends is what amounts to a virtual, or 'cyber' relationship and, for some, that's evidently not enough.  Moreover, I know that dipping in and out of friends' Wall posts is hardly conducive to a close friendship, thus I miss out on a lot of what's going on in their lives, but I was so angry – not venting, so not venting – that she called me on this.  I do my best, and after 15 years, you'd think K would know that. 

The loneliness thing really got to me, and was thrown back at me after I – I'm ashamed to say – used the 'disability card', with 'try being disabled'.  I hate using my disability to get a point across, or get things done though, as Gloria says, sometimes you just have to.  I didn't use it in this scenario to get sympathy, but I was so annoyed at K banging on about how stressed she was, how ill she'd been, how she couldn't afford to go anywhere, that I snapped.  I'm not saying that people around me can't ever say they're unwell, or unhappy, but when 90% of their life is spent being 'normal' and healthy, it annoys me a tadge when certain people make such a fuss about being ill for a bit.  God, I wish my reasoning for not being able to go out was down to money – not that I'm well-off, but you get my gist. 

Loneliness is a very subjective thing, I get that.  The loneliest of people might have dozens of friends, but maybe can't connect to them, for whatever reason.  While some people just have one or two really close friends, yet feel completely happy, and loved.  I'm – awkwardly – somewhere in the middle.  I've got lots of friends, but I can only properly talk to less than a handful of them and, while this select few stop me feeling totally isolated, I still get lonely in the sense that I miss out on the day-to-day minutiae of friendship. 

OK, so maybe I have vented a bit today; apologies!  Not really sure of the moral of this tale, maybe don't have an argument over Facebook?  Seriously though, to all the non-spoonies out there, absolutely feel free to indulge in a bit of self-pity when things aren't going well, but just remember your audience, cos for the majority of spoonies, life is like a permanent bad day.  To all the spoonies reading this, just do your best, and if friends aren't being supportive or patient, then they probably don't deserve the title of 'friend'.  That, and if it makes you feel any better, at least we've got each other; spoonies united… God help the universe.

BW xxx