Friday, 25 September 2015

#RABlog Week: Post No.6 On support...

Today's prompt:
Today's topic was actually about onset stories - how and when our RA started, things that happened, and so on. However, I've written two posts on that, both with slightly different foci - one here on the blog, which you can read HERE, and the other for Creaky Joints, which you can read HERE. So, I'm going with one of the wild card options instead:
I feel supported - so many times we need support. When do you really feel supported? What do others do to help you feel supported. What is the main support they offer?
Support is a many faceted thing, and something that, for a person with a chronic illness, can feel more than a little bit fraught. I'm a very independent person. I always have been, but it wasn't until I got sick and started needing help with various things that I realised just how independent I am. It burns to have to ask for help - I really struggle with it. Part of that comes from having spent so much of my adult life single - there was no one to ask. My kids learned to pull their weight around the house, and accept that sometimes we couldn't do things because I wasn't well enough, but I don't know that I'd label that 'support' exactly - besides, that wasn't their job.

These days, I have a wonderful partner who is incredibly supportive. It's in his nature - it's not something special he puts on for me because I'm not well. He's supportive of people generally. That doesn't mean he always gets it right though. He's an archetypal alpha male - so he knows stuff... He not only knows stuff, he knows it better than anyone else. That can be something of an issue at times. He sometimes second guesses me, forgetting that over twenty three years, I've had quite some experience developing strategies to get things done. I may look like I'm not managing to finish a particular activity because I'm on the couch and there's still stuff everywhere. What's actually happening is that I've divided the task up into stages and I've built in rest periods and he's walked in on one of those. It doesn't mean he has to rush around finishing everything because, *obviously* I can't manage to finish it myself! Sometimes too, he makes an executive decision that we won't do a particular thing because he decides it'll be too hard for me to manage. That gets right up my nose - it's no one's place to decide what I can do except mine. It's plain arrogant to make decisions for other people, and I told him that when we talked this out recently. To his credit, he got it, and apologised. I know he struggles with it still, because he wants to help, but he's having to learn to stand back and wait for me to ask.

I think that's probably the worst aspect of what happens for a lot of us. People mean well - I know they do. But they make assumptions that aren't theirs to make. I had a conversation with a friend recently about supermarket shopping. On bad days, she and I both use the trolley as a walking aid - we look 'normal' leaning on a trolley, rather than being younger women (obviously not in our dotage yet!) hobbling on walking sticks. She'd had an experience shopping with a friend who was 'helping' by pushing the trolley for her...refused to give it up because, NO, it was more helpful if my friend didn't have to manage the trolley. My friend needed the trolley for support to walk the supermarket...but nothing she said seemed to go in... The real issue was that the friend wasn't listening. My friend's actual needs weren't being heard. That feels just awful - and you don't have to be sick to have an experience like that.

One of the most supportive people I have in my corner is my rheumatologist. I got so lucky when I ended up with him. He is amazing. I saw him last week for a follow up visit after an MRI, and we had the most extraordinary conversation, which keeps coming back to me. He started by telling me my MRI pics were 'spectacular'. That's actually NOT something I wanted to hear - because it pointed to the severity of the issue. So he sorted out a couple of referrals for me and another follow up appointment, and then said to me that I was a complex case. That he could understand that in the past, I'd have had difficulty being heard by doctors and other medical personnel. That I'd have struggled to have them take me seriously - because my presentation isn't straightforward by a long way, and some of the side issues are pretty left field. Then he said to me that he wanted me to know that he was listening to me, that he'd always listen. 

He has a different level or awareness than any other doctor I've had. I spent two weeks in hospital when the disease lost the plot. My partner had to be overseas for business during part of that time - it was unavoidable and not moveable. A friend came from interstate to be there and came in every day, but had to leave before my partner came home. She left on the Saturday of the middle weekend. My son had been dashing in each day - sometimes very early in the morning - sneaking past the nurses because it was way ahead of visiting hours - or quite late. I was quite unprepared, on the Sunday afternoon to see my rheumatologist's head come around the curtains. I was gobsmacked and asked him what he was doing there - and why wasn't he with his children...? He told me that he knew my partner was still away, and that my friend had had to go home again, and he wasn't sure if I'd have anyone to visit me that day, so he just thought he'd pop in... He came to the hospital JUST to visit me. He is something else, that man.

It can be tricky with friends. Our friends have their own lives, as we do, and they're not as tangled up in ours the way family members can be. At the same time, they can sometimes manage to be a bit more objective than family members. Some of my friends are great - they ask, and they listen. I had one I was supposed to meet up with after a long time of not seeing each other, and on the morning of the day we'd booked, she called me sounding like a dead thing. She had the most filthy cold, and was calling to check whether we should get together or not - having remembered I'd said something about being more vulnerable to bugs and viruses. So, we cancelled. Because there's no way I could have been in the same place as her without risk, due to being immune-suppressed because of the drugs I take. She's the same friend who carted me around a string of antique shops hunting a really classy walking stick - because I truly hate the one I have from the chemist. It's black and plain - but it's a chemist stick - an 'aid', and it makes me feel like I need it. What I want, if I have to use a stick, is something so unbelievably classy and outrageous, that I *could* be using it just because it's so cool...then maybe I won't feel so bad about having to use it - my friend understood that too, and gave up a day to take me hunting.

I have other friends that don't really understand. One who, if I have to cancel a date, gets difficult, saying it would be good for me in myself if I got out. That's as maybe, but if I DO have to cancel, it's because, physically I'm really not doing well, and pushing it any further by keeping the date, is potentially going to trigger a big flare that could put me behind even more. I understand her disappointment - I'M disappointed too...I hate having to cancel something I've been looking forward to doing. Having to placate someone who doesn't get it on top of that disappointment makes it that much worse. 
I'm not much of a 'joiner' - I don't belong to groups much. Online support groups are something that have grown exponentially with the internet and social networking. They can be enormously useful for sharing information and support. However, they can also be hotbeds of competition and aggression. I have to admit, that shocked me. I ended up cutting back to one local group that we keep relatively small, and is one of the 'healthiest' online environments I know of. In other places I've seen people one-upping each other with symptoms and disease severity, taking people down if they appear to not be as sick as others, and other bad behaviour - because that's what it is. And it's NOT support. I think it comes down to one of my mantras - don't assume. When you're online, you can't know what's going on behind the stuff you see in posts and comments because you're not interacting directly. There's a remove and a sense of anonymity when we're online and that's something I have to keep remembering, because it appears to give some people license to behave badly. If we run into that when we're really struggling, it can be incredibly destructive.

Being truly supportive comes down to a few simple things - whether you're trying to be supportive of someone who's sick, or not. These are in the first person, but obviously can be adapted.
  • Don't impose what YOU think is support. Be respectful of me and ASK.
  • Listen to the answer - really listen. One of the hardest things I struggle with is being heard - don't just ask, hear and answer and go ahead doing what you intended to in the first place - listen to exactly what I said when I answered you about what would be most helpful.
  • Lose the general 'let me know if there's anything I can do' thing. Most of us find it quite difficult to ask for help, for a whole lot of different reasons. Be specific about what you can offer. If you're able to offer to drive me to an appointment if I need it, let me know that that's what's on offer so I know to call you and not someone else if I need to be driven somewhere.
  • Don't prevaricate - if I ask, and you have a genuine reason that you can't help that day, just say so. Don't make excuses - a simple, "I'm sorry, I'm already committed for that time" is absolutely fine. You don't have to justify yourself to me. And I need to be able to get on with calling someone else. 
  • Most importantly, allow me to make my own decisions about what I can and can't do. Don't ever assume. I may fall flat on my face - and I have. But that's for me to work out. 
It's not easy living with a chronic illness - and that's not to play the victim card, it just isn't. Having to care take others around the whole support issue is an added stress that just isn't necessary. It's one of the things that will stop me asking, if I think it'll land me in one of those difficult conversations. If you want to help, great, but think about what that really means. I don't need people to make allowances for me, as if I'm deficient - because I'm not.


  1. Holy crap! Can you please clone your rheumie and share him with all of us? I have a terrific one, but she's inching up towards potential retirement age and it'd be great to have someone else in the wings. :)

    Great post!

    1. I wish I could!! Then I could take the clone interstate when we move - which is happening soon, to an interstate city... I did suggest to him that he'd find Melbourne a nice change from Sydney, and couldn't he PLEASE move too...he smiled and said he appreciated that, but no... :-( He has referred me on to a colleague of his that he's promised I will find very similar, so fingers crossed!! So, all I can suggest at this point is that you consider moving to Sydney!