Today I read another wonderful post by Lindsay over at Musings of a Dysautonomiac, a fellow blogger who has POTS and MCAS. I ‘met’ Linds through my blog and am now privileged to class her as a friend, not in any kind of traditional way because we live in different countries and are online at opposite ends of the day, but in my heart. I look forward to her posts and Facebook messages, rally for her and struggle with her – all without saying a word because I don’t have the energy but I hope she knows that I see her and care about her life.
It’s a good job I make new friends every now and again because I’ve lost all my pre-illness mates. Every single one of them. Sometimes I’ve let the relationship go and sometimes they have but the end result is the same, and no matter who the instigator is saying goodbye to a relationship you once held dear is painful.
Like Lindsay, I traditionally got along with men better than women. Having said that, I always had one or two very close girl friends but they were often people who were in some way broken or needy and, being a caring person, I often seemed to fall into the parental role in my friendships which of course turned to crap when I got ill because I could barely take care of myself let alone anyone else. I’m also not a girlie girl and just find the banter and straight-talking attitude of blokes easier to handle than the complex subtleties of women which I often find bewildering. But then I got sick and realized that, on the whole, men don’t do illness. They make rubbish carers and simply don’t know how to react around sick people, especially a sick person who used to be feisty and independent and who is now…………well, still feisty but more needy 😉
After all these years I’m not even sure it’s possible for me to have good friendships with healthy people. They just don’t get it. Have no clue what my life is like or the struggles I face every day. And I’ve found I lose patience with their whining over inconsequential shite and am frustrated by how little they value their lives – their healthy, active, vibrant, full of possibilities, lives. And don’t get me started on how much they moan when they have a cold!
Occasionally, though, healthy people surprise me and there are two or three people at my Camera Club who do make an effort to ask the question “how can I make it easier for you to do x, y or z” and to include me in activities, for which I am hugely grateful. It’s a lot of pressure though. Here they are making special efforts to arrange outings and activities which I can take part in, but then I feel like I absolutely must take part because of all the trouble they’ve gone to. So what happens if, on the day, I wake with a migraine and can’t move, or have anaphylaxis and end up in bed puking? I let everyone down and although they try not be annoyed I know they are because, after all, they’ve gone to all that trouble just for me and the least I can do is show up.
Having close friendships with other sick people, however, is also challenging. Neither of you has any energy and trying to find a day to meet up when you’re both well enough can be a struggle. It’s vitally important you don’t just have illness in common too, otherwise all you do when you get together is talk about being sick which would be monumentally depressing. I met my now best mate at an M.E. conference about 15 years ago and neither of us are particularly girlie girls. We’re both creative and practical, like nature, gardening, being outdoors and have renovated houses, so have stuff besides our shared disease in common though I’ll never understand her passion for mines 😉 I honestly think I’d lose my mind if I didn’t have her in my life – no pressure then K!
Friendships when you’re chronically ill are tricky. I’d love more friends but realistically know I don’t have the energy, especially if the friend is well and expects to meet up regularly or do physical activities. Friendships with other sick people are easier in some ways yet harder in others – when you both lack energy there is a tendency to not communicate for months on end which, while understandable, is lonely. And while online friendships are great there’s no substitute for meeting up in real life and actually being with another person.
If you’re lucky enough to find someone you click with, who shares your sense of humour, your interests and who gets you and your disease it’s priceless. I’ve told my best mate that, should she ever threaten to break up with me, I am chaining her up in my shed so’s she can’t escape 😀 To all my online friends, whose caring, sharing, humour and empathy keep me going every day of my life “THANK YOU!” for being there and for being you. You make an otherwise unbearable life less lonely.