Feb 28, 2012

I Get By With a Little Help From My Friends

Asking for help is never easy.  We all have to do it from time to time of course, but for those of us with a chronic illness, it can feel like we do it all the time.

I have friends with clinical depression who need support on occasion; someone to unload on, someone to make sure they get to hospital if they need to.  I have friends with vision impairments who need help with navigation and reading menus aloud, and friends with limited motor function who ask me to cut up food and help them into coats and scarves when we go out.

I don't know if they feel the same anxiety I do when asking for practical favours.  I suspect some do.  Others seem not to.  I do know that I generally don't mind being the one to help out.  Who doesn't like to feel needed?

It's when the situation is reversed that I start to struggle.

Lately, I've been depending on my sister and friends to get me to the supermarket (I can't use my Coles-Myer gift cards online and I can no longer walk from the tram stop to my house whilst carrying things).  They've been good about it, but I can't help feeling like an annoying burden when calling.

I got a talking to the other day for not leaving messages.  My friend Erin was quite upset when she realised the missed call on her mobile was there because I'd run out of food, and that I'd hung up without asking her to call back.

While I'm certainly glad I have wonderful friends like Erin in my life, who will go out of their way to make sure I know they are there for me, the truth is, I felt very uncomfortable calling at all, and certainly didn't want the plea to be recorded, because honestly, this is what I hate most about having ME/CFS.  The dependency.  The lack of capability.  The lack of control and the resulting lack of freedom.

I've come to accept that many things - competitive sports, hiking, video games with complex graphics and loud concerts involving strobe lights - are now out of my reach, but independence is something that has been slipping tortuously in and out of my grasp for the last six years.  One minute I'm well enough to support myself, the next I'm back at Centrelink begging the bored girl at the desk to approve yet another claim for sickness allowance.  Faced again with unspecified-term unemployment and physical weakness, I find myself forced to depend on friends, family, medical professionals and, least comfortingly, the government, to get me by.

To make things slightly more awkward, I apparently give off the vibe of a woman perfectly capable of looking after herself.  For two years, I did little more than lie in bed, and even then, people close to me would give me a mild look of surprise when I suggested I might never be in a position to really take care of myself again.  It was a concept which took me a long while to come to terms with personally - I even went through the seven stages of grief over my own self sufficiency - but for others it never quite seemed to sink in.  On the few occasions I really broke into tears over the whole thing, I was met, not with comforting support, but with overwhelmed expressions of panic.  I'd spent so much time appearing to be fine that the distress was just plain unexpected.  On one occasion I actually ended up comforting the person I'd cried to.

Then, of course, I got well enough to go back to work, which made everyone around me feel better about it all, but it also took away the comfort I'd gained from accepting my own dependance.  Independence was infinitely preferable, but hope, even tentative hope, can be a dangerous thing when your health is still so fragile.  It led to three years of me desperately trying to stay in work to avoid feeling helpless again, hoping the new state of affairs could continue indefinitely.  I would regularly go into the office on days when I felt like I was dying of the flu because I really enjoyed being the one others could depend on.  The one who didn't need to ask for help.

It just wasn't sustainable though, and led to my current situation as well as a solid reprimand from my doctor.  I also went through a second, if condensed, version of the seven stages of grief.  (I'm hoping this blog entry represents stage seven: acceptance).

A friend recently told me she was not worried about my mental state, despite my situation.  It was a compliment.  She was telling me she thought me emotionally strong and I agreed with a flippant "yeah, yeah, I'm fine."  Inwardly I was concerned that I really may not be.  The desire to be fine and not to worry her had taken over though, so I said nothing.

But that's really not helpful to anyone, I suppose.  Friends need to know when you need them, and nine times out of ten they will be happier you spoke up.

One of my friends with clinical depression decided on a strategy a while back, to spread the calls for help around.  She is determined not to put too much pressure on any one person.  She has made sure she has a good support network, and she, in turn, is part of other people's networks.  It's an approach that works well.

I now have a housemate, two family members living close by and a large group of friends who I know will be supportive if I just ask.

The trick is to know that asking is okay.

Can't honestly say I've mastered that one yet, but here's to working on it.

9 comments:

  1. Oh mate I really get it! It's weird how the moments when someone sees you being strong and capable are never quite over written by the times you hang onto supports and walk a few steps in agony.I don't think we Aussies are really programmed to ask for help, I think we are programmed culturally to say "no worries - she'll be right mate!" and to travel on with a wing and a prayer. It's hard to say "I need help" or "I can't do that"... Good luck mate... I think acceptance is the goal of a lifetime!

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    1. Thanks :)

      I think you're absolutely right about Australian culture. I think we're also conditioned to root for the battlers, which makes things hard with a chronic illness. We are supposed to be out there trying to achieve as many things as possible with the time we have - career, travel, hobbies, new experiences - it makes it hard to accept, for you and those around you, when you are ordered to just rest.

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  2. I am really bad at asking for help. I also don't have a great support network, so asking for help feels especially awkward as these people feel like strangers. I don't know how to develop and maintain good friendships. Often, my only source of help are health professionals.

    It kind of scares me a bit, because, while my issues are caused by mental illness, if I suffered some physical impairment, I would quite literally have no-one to lean on...

    It sounds like you have a great network around you and you are doing a fantastic job maintaining it.

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  3. A great network is definitely important... unfortunately, the isolation brought on by illness itself - be it mental, physical, or both - makes it that much more challenging to build up that network.

    Having been brought up in isolation in a dysfunctional home where all my pleas for attention were ignored and where appearances were priority, I never learnt to ask for help, or, like Dorothy, to develop and maintain good friendships. So, this makes it that much more difficult to learn to ask for help or, to build up that network. Sure, I have a network of professionals and a crisis centre, etc. But most having spent most of my adult life in hospitals, therapies, transition homes or shelters and in pain, hasn't allowed me to really develop relationships that I feel comfortable enough in to ask for help.

    So, enough rambling, what I basically want to say is thank you for this post and making me (and others I'm sure) less alone in our alone-ness.

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    1. I hope it does help. Knowing you are not alone at least. I wish I had advice to offer on how to develop a network, but mine seemed to happen quite naturally during a period of better health. When I first got ill it really wasn't there the way it is now, and a lot of it was luck and circumstance. If nothing else there is the online network to talk to and get it all off the chest with :)

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  4. This post really spoke to me as it's exacty how I feel a lot of the time. I have friends who I can 'unload' on but really don't like to as most (if not all) of them are having their own life problems that they need to deal with. I know I could rely on my family but I no longer live close by and so it all falls on my boyfriend as he is the one here, looking after me day after day. I am unspeakably grateful to him but can't help feeling so dependant on him that I'm ruining his life, just because he's trying to keep me alive.

    As for the seven stages of grief, I know I am still battling with the acceptance. Most of the time, when I allow myself to accept my situation and that I'm totally dependant at the moment, it leads to bouts of depression rather than actual acceptance. Reading this has helped me in knowing that I am not the only one struggling with asking for help and appearing 'weak' and not being able to be independant in the way that I am used to.

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    1. Definitely good to know that others are having similar experiences :)

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  5. I struggle with this a lot as well. I also have ME/CFS since 2005 and have gotten to a similar point as you. A couple things have helped me:
    1) Some of my friends will say, "If there's anything I can do to help (not that I can imagine anything), please let me know." I've made a list of people that have said that and a list of things that I need help with. I've gotten different people to do laundry or grocery shopping or even clean my apartment that way.
    2) I also ask strangers for help with really simple things, things that don't take almost any effort on their part. "Excuse me, would you mind opening this banana for me?" "Would you mind reaching this item for me?"
    3) Knowing that community is important really helps, too. Humans weren't designed to exist in isolation. Experiencing the unconditional love of a family member or the support of an institution can make a really big difference. Plus, human progress is about specialization. So if we can get someone else to easily do that huge task for us, it makes sense to pass it off so we're free to do whatever it is that only we can do. For me, that's a lot of writing and listening to friends and praying.
    4) Slamming my head against the wall & feeling like a total failure as a human being. Yes, I feel like this as well. I'm learning that there are people who genuinely want other people to flourish and to accept their help. But it can be really draining to feel like you're always asking and never giving, especially if people close to you (like my family) are continuously complaining about how you act as if everything revolves around you.

    Best wishes,
    Abigail Cashelle

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    1. Hi Abigail, nice to meet you. Sounds like you've got a good system there, and well thought out. What you said about community really makes sense I think. We live together as a group and are designed to work together to get through life :)

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