Do you sometimes find it hard to talk about your AS to a friend or loved one? Are there times when it’s like you're both talking a different language; that it’s hard to get them to understand what you mean or need?
Let us at This AS Life try to translate: to offer some thoughts on your thoughts that you can share with the people important to you.
Helping you understand each other better is a great way for you both to get something more positive out of your relationship – to feel less like an #ankyloser and more like an #ankywinner. Here are 10 friendly examples to help people who matter to you understand why people with AS sometimes act the way they do – and what they (and you) can do to help.
Flares, eye problems, gut problems: AS throws them all up, all the time. Even dinner plans made that morning aren’t always ones AS lets people stick to. Check in to make sure everything is still ok and be prepared for a no show. It's frustrating, we know, but imagine how they feel being the one that has to cancel and stay at home too.
"If I’m a little absent-minded today, it's because my AS…sorry, what was I saying?"
Being in pain, on meds or tired aren’t the best ingredients for sparkling conversation. If people with AS sometimes seem absent-minded, distracted or, frankly, not interested in what you’re saying they probably don’t mean to be. Try and gauge how much AS is in the driving seat versus how much they are. Be patient – sometimes they might just need distraction and company but might not be very good company back.
Practical help for people with AS is often just as important as tea and sympathy. It might be looking after the dog, driving them to an appointment or just taking the washing off the line. Sometimes even little things feel like big things, which goes for kindness as much as chores.
"I don't need a kick up the backside, I have AS doing that already"
Resist the urge to give someone with AS a 'pull your socks up' conversation, even when the temptation to do so is overwhelming. They need support: not a good talking to. That said, you’re right to challenge them every now and again, just remember they can be fragile. There’s a fine line between not taking any nonsense and, even with the best of intentions, just kicking someone when they’re down.
Positivity is the best gift ever: bring as much with you as you can carry, especially when it feels in short supply for the person you’re meeting up with.
"Please don’t turn this into a 'bad day' contest: I hate seeing you lose"
In an ideal world, people with AS should listen to your problems as much you listen to theirs. If they don’t, don’t get frustrated and turn it into a contest: even on their good days, the chances are you still won’t win. The important thing to remember – on both sides – is that this isn’t ever the kind of contest where anyone should seek to be top dog.
At that time, it’s probably not going to be a hug, phone call or text that’s available. Maybe it’s a present: a DVD, letter or song playlist. Any help at 3am when you feel trapped and lonely is help you can’t really put a price on.
"I know I ask a lot – tell me a (sane) way I can make it up to you"
Being the friend or loved one of someone with a chronic illness must quite often feel like a one-way relationship. Remember, people with AS are grateful and wish they could say more than just 'thank you' for the 1000th time.
In fact, if you can think of some small way they can start to do that, it could help you feel better and them too. It might not be a two-week ski holiday or a solid-gold wristwatch; it’s a small gesture – a packet of your favourite sweets or them lending a book you might love. It’s a way they can show your feelings are important too. Simply start the conversation and see where it takes you.
They’re not asking you to turn up with a box of chocolates every time you visit (although chocolates are nice!), but a little token to say that you still ‘get it’ goes a loooong way. AS is an invisible disease and it doesn’t go away. The occasional small sign you understand that too helps people with AS know they’re not forgotten or irrelevant.
"I know I don't always seem grateful, but you have no idea how much I am"
If someone with AS has forwarded this post on, they probably don’t mean to be mean. In fact, it could just be this last point they wanted you to read.
No-one is perfect, including people with AS. Being there for someone with AS takes a heart of gold and the patience of a saint – almost as much, in fact, as having the condition itself.
This AS Life hopes reading this post has helped someone with AS - and the people around them – understand each other a bit better. Thanks for hanging in there - it means a lot.
This article was written by one of the resident experts at ThisASLife.com. A social site helping the whole AS community to: Learn. Share. Inspire. Discuss.