Furious and sad, at 3am

Well, I guess the ‘i can’t really be bothered to be bothered’ phase is over.

I’m furious, and I can’t even tell you why.

There is good advice out there for people like you (who are well) dealing with people like me (who are just about well again having been very sick).  Taking this advice can help you to avoid introducing your friend to what it’s like to feel like they’re not trusted anymore, and strip them of the dignity they’ve already had to fight to get back once.

If you’re reading this because you’re dealing with a work colleague, there’s some good stuff on the Health & Safety Executive’s website.  It includes quotes like, “Empowering an individual to influence their return to work can significantly boost their well-being and confidence,” and “Don’t make assumptions about your employee’s situation” .  They’re a useful reference as googling for this on a friendship basis produces little worthy results… I can find useful stuff like, “Ask the person what you can do to help and listen to their answer. Never assume that what you think is helpful is what they will find helpful,” and “They and their condition are always changing,” (which is true every week post my stroke has been like entering whole new era) but they are not official sites and their advice is a often bit muddled.  However, there is one paragraph that means a lot to me, and is my top tip for dealing with me this week:

What is important is that the person who is ill not lose his or her dignity. Illness carries with it a whole gamut of feelings: fear, anger, disappointment, hopelessness, sadness, grief, perhaps guilt or even shame,,, People often feel dependent and often resentful about that dependence. When you are conscious of these issues, you will more likely respond in a sensitive way.

In the whole time I’ve been sick and off, I’ve not been stressed about it for a second.  Now I’m better I’m dealing with people who seem to be making it their mission to decide they know better than me (or my medics) about what is right for me. I know – I really do know – it’s because they care and they want to do the right thing; they don’t want to be seen to do the wrong thing either.

But you know what, when this first happened my dignity went out the window.  I couldn’t stand up, and then I couldn’t balance so you don’t need too much of an imagination to work out some of the things I couldn’t do by myself when I was first in hospital.  But dignity there was neither required nor important.  Well now I’m back, and I’m pretty much back to being as normal as I ever was, and dignity is both required and important.

Please think carefully when you’re making suggestions to friends (or colleagues) who may be in my position: resuming normal life after a period of sickness that was not my fault.  I’ve worked hard to get to this point, to reclaim my independence and my dignity.  Do you really want to take it away from me?  No, I know you don’t; so please be kind and, most importantly, listen. Don’t make any assumptions or think that you might know best.  Invariably you won’t.  Well, not unless you have a medical doctorate.

(p.s. Be very careful re this in a work situation.  For my sins, I used to work in HR (don’t tell anyone) and the whole thing about not making any assumptions is really, really important.  Now from the other side of the fence, I’d say it was kind too.)

I was reminded today of a very special lady that I was fortunate enough to work with a couple of years ago.  We shall call her N, as I haven’t asked if I can include this (though I am certain she won’t mind as her story is already on the net by her own doing).  N has sickle cell anaemia (have a look here and here for two experiences).  For some, sickle cell can cause much pain and inconvenience their lives to the extent that can severely impair the way they are able to live their lives.  Yet N taught me some amazing lessons that I’m only now realising and valuing as much as I should.   I think they go like this:

  • N is in charge of N.  She’s good at it.
  • We’re not in a position to make any assumptions about what sickle cell means to N: everyone’s experience is different and hers is personal to her.  Don’t assume that because you’ve read the wikipedia entry, you know what the deal is
  • The only person qualified to know if N is overdoing things is N.  And her doctors.  Whom she will consult/visit/ambulance to if she knows she needs to.
  • She doesn’t appreciate being second guessed.  A question is welcomed; concern is touching; your non-medical-trained-advice is smiled at, but asking a question is going to work better for you both

They say that 50% of people who’ve had a stroke suffer depression.  It’s probably higher among younger people.  I imagine mostly this is because if it’s really bad, you have lost more than if you’re older (?? That sounds patronising, maybe I don’t mean that). But in my experience the stroke isn’t the problem.  The problems most likely to send me off into depression were (1) the stroke ward after I got out of the hyper-acute unit, because it was mixed with the geriatric unit, and (2) feeling undermined and second-guessed and by people who I’m quite sure love me but are also thinking that they know better than me.  Despite the fact I’ve been living this 24/7, 1440 minutes a day, for 2 months and 4 days.

I know I shouldn’t blog this one.  But I know the main person concerned does not know that this blog exists.  And I’m pretty sure that none of you know them.  So it’s fine.  I’m desperately trying to come up with a way to let them off the hook; for them to be able to move on – with my information rather than their notions – having not backed them into any corners.  It’s hard when I feel backed into a corner myself, but I have to be bigger than that. If I can’t be, how can I expect that of them?

It’s just utterly ironic that the first time I get stressed about anything, it’s about other people’s issues on preparing for the good bits coming back on line.  It’s sad, and funny, and sad again, because I know it’s done in love, and yet all I want to do about it is cry and scream.

Though tears stream my cheeks as I blog at nearly 3am, so I guess I’m mostly upset.

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4 comments

  1. Jayne says:

    Glad to see you’ve got your energy back to get bothered about things :-) :-)

  2. MariJoy says:

    Although I know you’re a young stroke survivor, I must say the matter abuot dignity for the SS is very important to older folks, too. My mom was 81 when she had a massive brain hemorrhage, and thankfully she is still with us four years later. I have done everything within my power to see she is treated with dignity at her long-term care facility, and I think this has made all the difference. Although she suffers from apraxia of speech, I can understand almost everything she says, and give her positive feedback always to encourage her communicative abilities – she has gone from severely damaged (not able to communicate in any manner at all), to communicative, curious and interested in everything around her…if you or your loved ones are going thru this – the brain is AMAZINGLY plastic and able to adapt – don’t give up!!

  3. CJ says:

    Wow, things *are* different in the UK. In the US, no one at work would be bothered with a person’s post-anything dignity. Here, the attitude is that if you’re not functioning at 100% all the time and in overtime, you must be a bad person who doesn’t deserve a job, or anything else. I *so* wish I could move to a saner country!

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